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Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jan 15, 2017 9:43 am
by Dandygal76
Hello there...

I just wanted to chip in on a couple of points (well this may end up a bit of an essay). Firstly, once the trial is finished there are other options so don't give up hope. Also, people do seem to do better when they add in alternatives so I would look at alternatives - you are not powerless like PC can make you feel. From a starting point I would (I follow a lot of stories and this is just anecdotal evidence from that):

- Take bitter melon capsules
- Take curcumin once off the trial - I think this can interfere with chemo so you need to monitor this.
- take a good multivitamin
- take strong B vitamins to reduce the risk of neuropathy
- no processed food and no red meat (I would love my dad to do this but he is stubborn)
- Keep active, even if for minutes a day. My dad has been fortunate enough to have a demanding teenager to get him off his backside and I believe this has helped him tremendously.
- Do not suffer side effects for a minute, not one minute. Nip them in the bud as soon as you get one. Once they take hold they are so much harder to deal with.

Who the hell knows, perhaps your trial will be the one. Perhaps by doing both at the same time it will get rid of it all. you must also look to the stat that says 3% (I have heard this is more now) make it 5 years... ... tic-cancer

I am not saying you will be the one on a pragmatic level but where there is life there is hope. With youth on your side why the hell would it not be you.

I know the professor said 17 months but you are young and it does make a difference. I am quite certain in my mind if they profiled the OS rate more specifically you would find yourself on the end of the normal distribution chart. Statistically you have every chance of being at the end of the curve. ... bution.htm

Watch those CA19 markers, even if the trial do not. You can get these from your doctor separately. They are not completely accurate but they are more so if you start charting them now and get to know how yours work and what effects them. Thank you as well for your post.. there was some really great information there. Sharing and comparing our knowledge does truly empower us all.

Re the chemo and neutrophils, this does appear to happen more often early on and hopefully your body will adjust. But, if it continues, they can give you injections that can help your body make them. This should not be a game changer so please do not worry too much at this stage. You just have to work through each symptom as thy come.

And remember always... you are not alone. We will be here for every minute of you doing this. The highs, the lows, and your new mundane normal when you find it (and you will). x

PS... you can have GemCap, Onivyde and new clinical trials are coming out all the time. And, when we have this discussion again in 2 years time, which I know we will, who knows what will be on the table. Where there is life there is hope. x

PPS, I will look into that trial later and let you know if I find anything.

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jan 15, 2017 10:16 am
by stepuha
Many thanks Dandygal76,
You are very good at motivating :-)
I will look into bitter melon. I can see that a lot of PC patients take it but I don't understand the data behind it for the moment. I started taking turmeric with Abraxane, four capsules a day. I go for walks every day and will hopefully start skiing tomorrow, now that the snow has finally arrived. I do pilates when I feel up to it. I find I am getting better at managing the side effects, now that I know what works and what doesn't. I will ask my oncologist for her recommendation on Vitamin B. She didn't think I needed any supplements last time I talked to her. Her view is that there isn't enough data to say that it works. I guess this is a usual response from oncologists. I didn't specifically ask her for Vitamin B for neuropathy. Maybe she will have a different response when I do. Her main concern is my weight. She referred me to a dietician who basically told me to eat everything, except for red meat and processed meat, which should be limited to 500gr per week. She advised not to limit processed sugar as it can help with calorie intake. She suggested I should add creme fraiche, real butter and mayonnaise to everything and eat ice cream. I can't say that I follow her recommendations to the letter. I still limit my sugar intake, something I can afford to do at the moment. If my weight becomes a problem, I may have to reconsider. I try and eat as much as I can during Abraxane treatments, as I know things will be different with Folfirinox.
Thank you for taking your time to motivate me and provide very useful information.
x Stepuha

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jan 15, 2017 10:42 am
by Dandygal76
If you want to fight then the mind is half the battle.

I had a lovely man called Mark post early in my thread the following....

"I take a multivitamin as my tumour and stent interfere with pancreatic function. I have taken bitter melon capsules after seeing an article in the journal carcinogenesis. ... cin.bgt081

I have taken Nigella Sativa after reading this article.

and simvastatin after last years ASCO meeting. ... ajor-study"

He lost his battle after 3 years due to a stomach absorption issue but was otherwise doing well. However, he was a GP and this is the supplements he took after some decent research and may help you decide on bitter melon route etc. x

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jan 15, 2017 4:45 pm
by Proud Wife
Just to say I am thinking of you brave lady xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jan 15, 2017 6:06 pm
by stepuha
Thanks again Dandygal76,
I will read the information in the links carefully.
Thank you, Proud Wife.
x Stepuha

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jan 15, 2017 9:23 pm
by Marmalade
Good for you Stephua, we know how demoralising things must be for you at times but you have done so well and the lovely Dandygirl and others on here have have so much knowledge, experience and enthusiasm that you cannot help but be buoyed up by them.

Good luck and tell us how you are getting on

Marmalade x

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Jan 16, 2017 4:21 pm
by Wife&Mum
stepuha wrote:

> I read about the success of the Phase II trial HALO 201 for PEGPH20 in
> combination with Abraxane. The information refers to an ongoing global
> Phase III trial of the same combination but I can't find any reference to
> it in the UK or France. Does anyone know if this trial is available in
> Europe?

Hi Stepuha
I have found some info about this trial including a list of locations, including several in France and U.K: ... ocs=Y#locn

but unfortunately it does say that to be eligible you mustn't have had prior chemo for metastatic disease.

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Jan 16, 2017 6:18 pm
by stepuha
Hello Wife&Mum,
Thank you for the link. My cancer centre is actually on the list with a status 'not yet recruiting'. Even if it were, you are right, I would not be suitable but maybe others on this site may be.
One thing I am not clear about and maybe someone here can answer. Is pancreatic ductal adenocarcinoma the same as pancreatic adenocarcinoma? I saw that in some articles 'ductal' is specified but in others not. My diagnosis said pancreatic adenocarcinoma, without 'ductal'. I would grateful if someone could clarify.
Kind regards.


Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Jan 16, 2017 7:41 pm
by Wife&Mum
I'm pretty sure the 2 terms are interchangeable so articles specifying 'ductal' will be relevant to your situation.

Re: 36 yo adv pancr cancer patient treated in France

Posted: Tue Jan 17, 2017 7:45 am
by Elaine123
Hi Stephua this is just a little post to say thinking of you and wishing you a good week. It is a pleasure to read the posts between you and DG I think the knowledge and drive and determination the two of you have will be so beneficial to you.
Take care Stephua

Re: 36 yo adv pancr cancer patient treated in France

Posted: Tue Jan 17, 2017 10:52 am
by Proud Wife
And you will have now seen my post advising that DG cannot post on here for 3 weeks. In light of what Elaine has just written, iIf either Elaine or Stephua would like contact with me outside this forum please contact admin and ask for your details to be passed on to me. A few of us communicate on FB and that way, you can stay in contact with DG xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Wed Jan 18, 2017 7:35 am
by stepuha
Many thanks to Wife&Mum, Elaine123 and Proud Wife!
A quick update on my chemo and a meeting with my oncologist:
My blood results on Monday were mostly in the norm. I didn't really do anything different last week and had one less day to recover, so I have no idea why they were better this time around. The only low result was for Hemoglobin. The chemo was authorised but they gave me injectable iron to help with aneamia.
Veema, I couldn't find Napolina tomatoes in our supermarkets. I will see if I can order them on Amazon.
I finally got to see my oncologist and decided to discuss future prospects with her. I asked how long I could expect to be on this trial. She said 6 month was the minimum, after that everything could be discussed. I asked her about the preliminary results of the trial. She said more patients had to be recruited but for the moment the median survival stood at 11 months. They will probably need another year before they can release some results. One of her patients is now on his 9th cycle, so he has been taking it for over 16 months. I asked her how soon she thought the cancer would become resistent to this regime. She can't say, it is individual. I guess, it is a good sign that the other patient has been doing it for so long and it has not become resistant. I asked her if the operation is an option for me at some point. She said it is possible but only if all the mets disappear completely. Finally, I asked her about the Nanoknife and she knew nothing about it, despite the fact that it is avaiable in France (only in one hospital). I told her about the study that Prof was about to publish and said I would bring her a copy of the study. She wasn't against the idea, she just wanted to know more about it.
Overall, a good start to the week. I am looking forward to the following week without chemo. I went skiing on Monday and felt so good, despite it being freezing and very windy. I can't wait to do more when I recover from this chemo.
Sending you all lots of positive energy.
x Stepuha

Re: 36 yo adv pancr cancer patient treated in France

Posted: Wed Jan 18, 2017 12:33 pm
by Proud Wife
Don't order via amazon, you never know if you get the real thing! Im happy to buy and send to you. Ask admin to pass on your details to me so that we can communicate off forum. xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Wed Jan 18, 2017 8:05 pm
by Marmalade
Dear Stephua,

How lovely to read that you have been able to ski! It must make such a difference to your morale. It's very good of you to post your conversations as I am sure they are of great interest.

Verified trial results for nano-knife for PC are scarce which is why most countries are reticent to approve or expand the use of this procedure. There have been documented trials but only small ones and have not been subject to peer group scrutiny. Nanoknife for other cancers is fairly well documented and used. There is an NHS trial in progress in Leeds I understand but this has not reported yet. Prof has collected sufficient data but to date has not reported his findings. They are eagerly awaited and have been for some time.

May your good start continue this week, it's beginning to get colder again here but not too windy thank goodness.

Best wishes xxx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Thu Jan 19, 2017 3:17 pm
by stepuha
Hello Proud Wife, thank you for your kind offer. Admin, please share my contact details with Proud Wife and Dandygal76.
A friend of mine from the UK just booked a flight to come and visit, she will bring me enough Napolina tomatoes for the following course. I will only need them now in March. Gemzar/Abraxane is finished for now, next month is Folfirinox and they give me G-CSF to bump up the bloods with it.
Nevertheless, I will be grateful for your help in the future, Proud Wife.
Thank you for your warm wishes Marmalade. Prof L told me in a consultation last week that his report has been sent to Cancer Journal, so I am hoping that this will be published soon, although 'the Cancer Journal' I came across online seems to publish only 6 issues per year with the next one due at the end of February. I don't actually know what Cancer Journal he was referring to, so I may be looking at the wrong one.
x Stepuha