36 yo adv pancr cancer patient treated in France

[stepuha]

Hello everyone,

I would like to share my experience of being diagnosed with advanced pancreatic cancer and treated in France.

I am a 36 years old mother of two young children.

Before being diagnosed I was never really sick with anything serious, so naturally I could not understand how this could be happening to me. I was healthy, exercised regularly, didn't drink or smoke and always paid attention to what my family and I ate.

I was diagnosed with advanced pancreatic cancer in October last year, two and a half weeks after the start of my symptoms. I suddenly started having diarrhea. As I am used to gastric infections with the kids, I didn't think much of it at first. A week later, when the diarrhea didn't stop, I went to see my GP who noticed that my eyes were slightly yellow. She suggested a blood test which I did the following day. At the end of the day she called me asking to come and see her urgently. The test showed that my ASAT, ALAT and GGT markers were through the roof. She suspected viral Hepatitis and asked the lab to test my blood for different strains of it. The lab called back saying that they couldn't find what strain it was. The GP then referred me for an urgent ultrasound which I was able to have the day after. When I brought the results back to the GP on the same day, she told me to go straight to the emergency room in the regional hospital.

During my day at the hospital I had another blood test and a CT scan. I was told that I would remain in the hospital for a week as the CT scan showed that my bile duct was blocked and they couldn't say what was blocking it. They wanted to perform echoendoscopy to see what the issue was. This was done 4 days later. During this procedure they put in a metal stent to open up the bile duct. Whilst recovering from the general anaesthetic I had several doctors coming to see me, everyone saying different things that didn't make much sense. I kept asking questions and they just replied saying they had done a biopsy of what they had found and they were waiting for the results. I remained in the hospital. The following day I had another visit from a gastroenterologist who told me that although the results of the biopsy weren't back, there wouldn't be any good news. It was all bad news, I had pancreatic cancer, it could not be cured but only treated and I should prepare my family. Needless to say I had a bit of a shock. I kept asking to see the results of the tests or scans but they were delaying it. They sent me back home on Friday asking me to come back on Monday for the final verdict. The following Monday I was told that although the final document had not been prepared, the laboratory confirmed over the phone that I had advanced pancreatic cancer (adenocarcinoma) with metastases in the liver. The operation was not an option. They suggested I should start Folfirinox but not before my bile flow improved and liver markers reduced. During the weekend I did some research on pancreatic cancer and read about the potential to reduce the size of the tumour with chemotherapy to enable the operation. I asked the doctor whether this could be possible but she said no. Once they start the chemo, it either works or doesn't. Although I was happy that all the tests were performed by the hospital quickly, I was so shocked with the negative attitude they had that I asked them to refer me to the regional cancer clinic in Lyon for a second opinion. I spent the next week trying to get copies of scans and results from the hospital and pushing them to give me a referral letter whithout which the cancer clinic wouldn't accept me. In the meantime my friends started contacting various doctors in Ukraine, Germany, Netherlands, Canada, France and Switzerland asking for their opinion on the possibility of operation. Everyone wanted to see the scans, of course, so we were looking for the ways of sending these worldwide. One of my friends referred me to a Professor of Oncology in the University Hospital of Geneva. My appointment with him was like a breath of fresh air. He turned over the screen with the scan results towards us, talked us through everything on the scans, clearly answered any questions we had and generally made us feel that there was hope. He suggested to carry out a biopsy of the liver and arranged that in the same hospital a few days later. The professor also suggested molecular profiling but unfortunately the material collected during the biopsy was not sufficient to perform it.

Around the same time I had a central line put in the hospital where I had been diagnosed originally.

By this time I started receiving replies from the doctors abroad. Everyone agreed that chemotherapy was the only option (there were multiple metastases in the liver) but it was possible to shrink the tumours with chemotherapy and operate at a later stage.

A fews days later I had an appointment in the cancer clinic in Lyon. I had a better feeling about the clinic and the doctor there. The doctor offered me to take part in the GABRINOX clinical trial which combines GEMBRAX with FOLFIRINOX (one month each). GEMBRAX is not available in France at the moment. One can only have acess to it through a clinical trial. The doctor said that the trial has been showing good results, that one of their patients had the tumour removed 18 months into the treatment (I am not sure whether this is good or not). I also liked that fact that whilst on the trial I would have regular blood tests, CA 19-9 tested once a month and a CT scan performed at the end of each cycle of two months.

I agreed to join the trial and I started chemotherapy on 9 November 2016.

My first month on GEMBRAX was manageable: tiredness, nausea, diarrhea and hair loss. The doctor prescribed many different medications to help with the side effects. Some worked, some didn't. I also received a prescription for Creon several weeks into the treatment and that helped with digestion. I didn't lose any weight during the first month.

At the end of the month I had my blood test, it showed that my CA 19-9 increased from 306 to 487. This made me worried but also very angry. The doctor explained that it was too early into the treatment to see a reduction and that CA 19-9 can be influenced by my bile flow problem. This gave me some peace of mind.

Folfirinox was a different cup of tea: vomiting during 10 days with the first treatment and 8 days with the second. Also, neuropathy and tiredness, stomach cramps. I lost two kgs in the first two weeks, two more kgs during the third. Luckily I had 5 good days at the end of the month when I could eat and drink, so I managed to gain back the last two kgs.

Earlier this week I had my blood test and the first CT scan after the start of the treatment. The scan showed an overall reduction in the size of the tumours of 25%. CA 19-9 dropped from 487 to 446.

Unfortunately my doctor was sick, so I was unable to discuss the results with her. I saw another young doctor who only told me that the treatment is working and we should continue with the same.

I had GEMBRAX on the same day.

The recent results filled me with hope but I still have no idea what lies ahead.

Reading the stories of other pancreatic cancer patients I understand that there is no way of saying how successful I am going to be at fighting this disease but I am trying to be positive and hope that I will at least gain some time until new treatments reach clinical trials stage.

The New Year started on a positive note for me and I hope it brings good news to all of you.

Best wishes,

Stepuha

[Proud Wife]

Hello Stepuha

Welcome. I am so sorry to read that you got this evil disease so young but I'm loving your positive attitude. May 2017 be kind to you and your wishes come true. Please keep us posted on your progress.

Much love xx

[Veema]

Folfirinox absolutely can shrink the tumour...it did with my husband, but I am unaware of anyone who will operate when there are mets. But...who knows what this combination of chemotherapy can achieve...I've never heard of it before.

Lots if luck with it...keep us posted.

Vx

[WifeampMum]

Dear Stepuha,

Welcome to the forum but I very sorry that you find yourself here.

Thank you so much for posting, I'm very interested in learning more about how PC is treated in other countries and hearing about new trials. It sounds to me like you are receiving absolutely the best treatment for your situation and I do hope it's successful in downsizing the tumours so that you can be operated on for a chance of a cure. As Veema says, in the U.K. when the disease is Stage 4 it's considered inoperable but they seem to do things differently (and more aggressively?) overseas. Hopefully the U.K. will catch up at some point.

My hubby started out in May 2015 with an inoperable adenocarcinoma on the head of the pancreas. It involved veins but was otherwise limited to the pancreas. He received 3 months of folfirinox then 5 weeks of chemoradiotherapy, after which he was deemed operable. He had a Whipple in Feb 2016 and is currently very well. I sincerely hope that your path is equally successful.

Please keep posting if it's not too much bother and let us know how you're getting on.

W&M xx

[Elaine123]

Hi Stepuha

Welcome to the site not exactly where I guess you wanted to be. The people on the forum are fantastic and have a wealth of knowledge and the nurses are brilliant and will allay your fears , give advice and just be there for you. Welcome

Elaine

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[Dandygal76]

Hi Stepuha,

I am sorry you got this awful disease, there is just no rhyme or reason to it sometimes and it must have been such a shock to you. I have seen that trial and it does look interesting. The chance to blast the thing with Folfirinox and Gem/Abraxane on separate cycles seems to me the best of all worlds. The negative attitudes when you want to fight back can be extremely cruel, especially at a young age like you. I am glad you have found someone more forward thinking and they seem to be more positive on trials. Whatever happens, do not stop looking until you find a doctor to treat you that you trust and is willing to support your decision making as much as possible.

I am guessing here that you have some money if you have been looking at treatment abroad (I may be wrong though). If you cannot get help with an operation then you could look at nanoknife on the pancreas and ablation on the mets. I would suggest you inquire about this here...

https://www.facebook.com/groups/417793575069021/

They are nanoknife warriors and there is a wealth of knowledge if you want to ask about it. I believe there are options in Germany and London with 2 different doctors of high regard but I am not sure the one in Germany will treat the Mets.

You will still need to keep up with chemo though.

Both Folfirinox and Abraxane can cause some awful side effects but please come back and post any issues you have, talk to your doctors and talk to PCUK as there are things to help. My dad's doctors did not even know about half the solutions the PCUK nurses came up with!

We are all here for you and rooting for you.

Much Love

DG x

[stepuha]

Dear All,

Thank you very much for your kind words and wishes!

It is true that the majority of doctors I contacted considered my tumours inoperable at the current stage. They will only consider an operation if the mets disappear and the tumour becomes localised. There was only one (Ukrainian) doctor who agreed to operate in my current state but I don't feel comfortable with such a gung-ho approach.

What gave me hope was that the mets in the liver reduced at a similar rate as the tumour in the pancreas, so hopefully it is possible to get rid of them altogether. But maybe I am wrong, I am new to this and may be overoptimistic.

I have been reading about the Nano knife option and it sounds interesting but I don't think I can do that whilst being on the clinical trial. The researchers wouldn't want to have anything affecting the results of the trial. I can't leave the trial as I will not be able to re-enter. Given that the current treatment is working and that Abraxane is not available outside the trial, I think it is safer to stay put.

It is, however, very helpful to be aware of this option for the future, so I can make swift decisions when the time is right. The money issue can be resolved if and when I get there.

I am tolerating the Gembrax treatment even better this time. I don't know if my body is getting used to it.

I look forward to my CA19-9 results at the end of the month to see whether all is going the way I hope.

I will keep you updated on my progress.

Best wishes,

Stepuha

[Dandygal76]

Stepuha,

We were in the same position re clinical trial and not being able to do Nanoknife at the same time. What I would say is pay the £400 for a consultation in London, let him get to know your face and give you a second opinion (it helps when they really know who you are). Check you are eligible firstly and then line it up that you can do it quickly if events turn. On top of that... you can keep sending your CT scans there and get a second opinion. I paid a one off extra for this to keep the incentive going to check the scans but it was never asked for. Prof L is renowned in radiology and he has (hopefully) just saved my dads life and given my dad another day to fight. If we had not had the prof second opinion and relied on the trial radiology opinion we really would have been screwed ( that was another consult + scans cost). We are in turbulent times but still hopeful. Please do not rely just on trial opinion... I am learning they are fab doctors but a different skill set and lovely in being optimistic (which is priceless in itself.. especially now for you). Do get second opinions, especially if something changes that they are happy with (not every minor change... you will learn yourself what matters).

Are the trial checking your CA19's and not someone else? This is just a matter of interest to me (and maybe you) if they are not.

On another note (CAVEATED NOT PCUK OPINION TO SAVE THEM HAVING TO POST AROUND THIS OR DELETE IT) if you go to London and the procedure is not an open operation I have been informed (not tested) the trial cannot tell, they will think it is the trial effect. Also, they cannot detect Cannabis Oil or anything else on their 'don't try and help yourself list'. I know the ethics is rubbish around this but it is your life and you are empowered to research all options around this. The ethical way to go is tell them afterwards so your data can be excluded.

My dad for some reason was extremely affiliated with the trial doctors and would not do this. If it was me at 36... I may think differently. Everyone is an individual though.

I am always a little unhinged around all this so do bear that in mind. All I care about is your treatment pathway and making sure you can make every informed choice to survive. Sod the rest of them.

And for everyone that thinks this is wrong... perhaps Stepuha will be the one to reach 10 years with a more holistic approach and will start a new whole trial as a result and save us all. x

Edited January 11, 2017 by Dandygal76

[stepuha]

Thank you Dandygal76,

Your advice makes sense to me.

I will request a consultation with Dr L.

Kind regards,

Stepuha

[Dandygal76]

I would really love to see a trial still from more altruistic means that would do something like this trial and add in nano and more holistic measures. If there is not a 'make money' issue then can't there just be one trial that is not in a silo. X

Edited January 11, 2017 by Dandygal76

[stepuha]

I am surprised Dr L is not doing one. It is in his interest after all. Surely the equipment manufacturer is also interested in getting this approved.

I spent hours last night thinking about the potential consequences and the ethical aspect of going for the Nanokinife procedure without telling the consultant and the clinical trial team.

I don't feel comfortable doing it without my consultant's knowledge, not at the moment anyway.

In any case, there is no harm in having a consultation with Dr L and getting another opinion on the scans. It is good to understand what options are/could be available.

x Stepuha

[Dandygal76]

Yeah.. I get that, it wasn't for my dad either. I am not trying to push you one way or the other but I am a great believer of informed choices all the way. I can give you every ethical and non ethical route re this disease and often will do

Ignore as you see fit... I will take no offence because it is your body, your mind and your treatment pathway.

Re the trials and Prof L... there is no money in Nanoknife in terms of equipment and use. The technology is actually not that advanced. Prof L has a 3 week waiting list and so he has no incentive as he is fully booked. I am a believer in the technology and the 'first do no harm' and Prof L has helped a great many people and I know he believes in what he doing. But, we must always remember why many Professors in this arena do the private route as well. Ultimately it is to supplement their incomes - the private fees to Prof L alone for an hour long procedure (plus prelims and follow up) is £2k - just for his time. There is absolutely nothing wrong with that but I think an altruistic all encompassing trial need to be led by the likes of the NHS and the charities. I really do believe they could change treatment pathways by combining some of the current treatment and holistic approaches. There is no money in it but they do need to put their heads together and give it a go.

x

[stepuha]

Hi everyone,

I had my Skype consultation with Professor yesterday. He says I have seven small mets in the liver and a 3cm tumour in the pancreas. He can ablate the mets and do the Nanoknife on the pancreas in three sessions, as things stand now. I explained that I am part of the clinical trial which is working for the moment and he suggested to continue with the trial, monitor the trend of my CA 19-9 levels in order to try and understand when the trial stops working. He also asked me to send him all my scans so he can monitor my progress. He will not charge for reviewing the scans. He said that Gembrax usually stops working after 7 months and Folfirinox after 9 months. I don't know how long the combination of the two will work for.

If chemo removes the mets, he can then do one Nanoknife on the pancreas. This will obviously be considerably cheaper as each treatment costs around GBP 13k for UK citizens. Apparently the price of met ablation is the same.

He was surprised to hear that a patient was operated in France after the mets disappeared. He says this wouldn't happen in the UK once it has spread. Just because the mets are not visible on the scan, it doesn't mean they are not there. He says it is difficult to see anything under 1cm on the scan.

I asked him about his study and whether it has been finished. He said he has already sent it to Cancer Journal, so hopefully this will be published soon. He said, according to his study, in stage 4 patients Nanoknife and ablation extended median survival to 17 months. He referred to one patient with Stage 4 being alive five years later.

He did say that this treatment is not curative but it can help control cancer.

He is in the process of changing his secretary. XXX (name removed - moderator) no longer works for him. I believe it is XXX (name removed - moderator) who will work with him from now on.

One more thing, I read somewhere that Nanoknife cannot be performed with a metal stent. He said this was not true and he has been performing Nanoknife with a metal stent without any negative results. The five year survivor he referred to earlier had a metal stent at the time of the procedure.

Overall, I am happy that I had a consultation and happy to know that there is another option available when I am ready. Given that I am currently taking two of the main effective chemotherapies, once they stop working, there is nothing else, which is a scary thought.

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?

Finally an update on my treatment: I had a bit of a hiccup earlier this week when my chemo was cancelled due to low levels of neutrophils. I was surprised to see that my blood results after the first session of the second cycle of Gembrax were so low as I felt better than the first time around. The following day I received a call from the hospital saying that after checking the protocol my blood results were sufficient to continue, so they asked me to come and do the chemo on Wednesday. Now I have only 6 days to recover before my next session and I am worried that I may be in a similar situation again. I asked for the G-CSF but I was told it was not necessary at the moment.

Wishing everyone a nice weekend.

Kind regards,

Stepuha

[Veema]

Just a quick one on the neutrophils...we were told that Napolina tinned plum tomatoes were good for keeping neutrphil levels up...no idea why or how and other tinned tomatoes apparently don't have the same effect, but Nige always had them and never missed a chemo...

Vx

[stepuha]

Many thanks, Veema.

Will try Napolina tomatoes.

x Stepuha

[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...

http://www.targetedonc.com/publications/evolving-paradigms/2016/pancreatic-cancer/evolving-paradigms-in-pancreatic-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.

https://mathbits.com/MathBits/TISection/Statistics2/normaldistribution.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.

[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

[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.

http://carcin.oxfordjournals.org/conten ... cin.bgt081

I have taken Nigella Sativa after reading this article.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2587125/

and simvastatin after last years ASCO meeting.

http://www.theguardian.com/society/2015 ... 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

[Proud Wife]

Just to say I am thinking of you brave lady xx

[stepuha]

Thanks again Dandygal76,

I will read the information in the links carefully.

Thank you, Proud Wife.

x Stepuha

[Guest]

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

[WifeampMum]

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:

https://clinicaltrials.gov/ct2/show/study/NCT02715804?term=halozyme+301&rank=1&show_locs=Y#locn

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

[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.

Stepuha

[WifeampMum]

I'm pretty sure the 2 terms are interchangeable so articles specifying 'ductal' will be relevant to your situation.

[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

Elaine

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