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36 yo adv pancr cancer patient treated in France


stepuha
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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

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  • Proud Wife

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  • Dandygal76

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  • Elaine123

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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

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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

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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

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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

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Stephua you need to email admin directly to ask for contact.


And yes whenever you need anything just shout! My son loved saucisson so we can do swapsies!!!!

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Thank you Proud Wife,

Sorry, I am still new to this. I will email Admin.


For those who are interested, there is a new immunotherapy+standard chemo trial for advance pancreatic cancer which just started in January 2017 and currently has a status 'not yet recruiting'. It is offered in the UK and in France for those with 'Metastatic or unresectable cancer and considered by their physician to be indicated for a new line of SOC as listed in the protocol':

https://www.clinicaltrials.gov/ct2/show/NCT03009058?term=leon+berard&rank=128

Here is a link to an article talking about the results of the previous study with the same drug for pancreatic cancer:

https://www.sciencedaily.com/releases/2016/09/160908131055.htm

UK locations:

St George's University of London, Institute of Infection and Immunity Not yet recruiting

London, United Kingdom, SW17 0RE

Contact: XX

Royal Marsden Hospital Foundation Trust Not yet recruiting

London, United Kingdom, SW3 6JJ

Contact: XXX

I wanted to post this in the Clinical Trials thread but couldn't find one. Please could you guide me where this information should be posted.

Best wishes,


Stepuha

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PCUK Nurse Rachel C

Dear Stepuha,


Thank you for your post and links to the Study of IMM 101 in Combination With Standard of Care in Patients With Metastatic or Unresectable Cancer or the Modulate trial. We are aware that this trial is due to open in January, so are waiting eagerly.


It is a Phase I/II trial for patients with metastatic cancer (including pancreas cancer) incorporating immunotherapy with the best available treatment available (or standard of care) and its main purpose is to assess for side effects and to ensure it is safe to use in this setting.


We have a clinical trial finder, located via the link below:


https://www.pancreaticcancer.org.uk/information-and-support/clinical-trials/find-a-clinical-trial/clinical-trial-finder/


Once this trial is open to recruitment, you will be able to access its details here and where it is open to recruitment in the UK. We know that within the UK, sometimes different treating hospital can open at slightly different times. However, we will be able to alert people to which hospital it is actually open in.


We wait with abated breath….Thank you again!


Kindest regards,


Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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  • 2 weeks later...

It has been a while since I posted as I didn't have anything substantial to update you on. This doesn't mean I haven't been visiting this forum. I religiously check all the updates on a daily basis. I don't comment much as I often don't have any advice to give, neither can I say things in any better way than so many other amazing ladies and gents on this forum who are always so supportive. It's under a month since I started my thread but I didn't need to spend that much time reading stories on this forum to realise what a PC virgin I was and still am. This disease is truly dreadful. The effects it has on the life of patients and their carers are devastating. The more I read over the last couple of weeks the more depressed I got and by the end of last week I just found myself completely unstable and bursting into tears at any mentioning of the disease or any conversations about future. This morning I spontaneously started crying on the street and in the car about five times.

Of course it doesn't help that I have to talk about the disease quite often. I am blessed with an amazing support network of family, friends and colleagues but this also means that I have to provide update after update on how I am feeling and it becomes draining. I also tend to wretch every time I mention or think about chemo, so I think I have anticipatory nausea. I will ask my oncologist for Lorazepam or its equivalent tomorrow.

I hate to see myself in such a state. It is not like me, I am the strong, positive and unemotional type.

Besides my mental state, here is what happened recently.

I had my last Gebzar+Abraxane treatment on the 17th. It was uneventful except that I started having new side effects: nose bleeds, very dry/cracked skin in the nose, insomnia, inflammation in the gums. This has all improved since. It really helps to have a week off chemo.

I went skiing a couple of times early last week and really enjoyed the exercise, sunshine and blue sky. What a difference a little bit of sunshine makes to one's mood.

My daughter has been driving us up the wall. I can't count the number of stand offs I have had with her in the last two weeks. She is as stubborn as her mother. I was so angry with her until my husband was told by her English teacher that she burst into tears in her class and told her about mummy's illness. Poor thing was feeling my vibes and I got angry with her. I felt like a terrible mother. I started giving her more attention, more kisses and hugs and she seems to be easier to deal with.

My daughter also brought home a virus from school which I, of course, picked up, so found myself with high fever last Thursday. Another thing to worry about, I am supposed to have Folfirinox tomorrow, so fever was not something I needed. Miraculously that virus only lasted 24 hours and I was back to normal by Friday afternoon. This is the second time I picked up a virus from my kids since the beginning of my treatment and just don't know how I can avoid it. Last time I was in bed with high fever for five days straight with the fever going up and down constantly. I was advised to wear a mask but that scares children. Also, by the time I find out that they are sick, I have already hugged them and kissed them and cuddled on the sofa with them just to realise that they have high fever.

I was really looking forward to a visit of my friend and her son who live in Germany. They were meant to spend the weekend with us and go skiing but they had to cancel their trip last minute because my friend was sick. She said she couldn't take responsibility for passing the virus on to me. I am, of course, grateful, it is just rubbish that my new normal means I can never plan anything in advance and often have to cancel plans last minute because of the risk of infection. With so many viruses around in winter, it is a constant worry that I will get sick and miss my chemo. I am sure I will get used to it.

At the end of last week I started having some new pains in my tummy, the spasms in the area of the pancreas came more often and I seemed to have more gas, despite taking Creon before meals. I think I felt the same way during my first week off Gemzar+Abraxane chemo. After my first month of Gemzar+Abraxane my CA19-9 actually increased, so here I was panicking that Gemzar+Abraxane is probably not working. After all I read somewhere that often if Gemzar+Abraxane works, Folfirinox doesn't and the other way round. I definitely knew that Folfirinox worked, so it must have been the other one that didn't.

Anyway, you can see that I got myself in the right state mentally in time for today's blood test and especially CA19-9 results.

And then the results came through and my CA19-9 dropped from 446 to 141...what a relief...ASAT came down to the normal range, ALAT improved, only GGT increased. If anyone can guide me as to what this may mean, I would be very grateful. My platelets, leucocytes, neutrophils are all in the normal range. Hemoglobine is low but no lower than last time, which means that tomorrow's Folfirinox should go ahead. I have been dreading Folfirinox since my last treatment but I am just happy that my treatment can go ahead as planned and that it appears to be working. Of course, CA19-9 is not a scan and may not be an accurate indication of whether or not the treatment is working but I like the trend of it going down (if two months in a row can be called a trend).

So this evening I am feeling positive and hopeful again. I am going to try and spend less time on the forum going forward (not sure I will succeed as it is very addictive). I just don't think I am strong enough at the moment to keep hearing bad news. I am sorry that I can't be as supportive as others. I promise to do so when I get my act together.

Wishing everyone to get some good news this week.

Kind regards


x Stepuha

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You have got to focus on you...I totally get that reading some of our depressing posts makes you feel more negative. That's the rotteness of this disease, unfortunately there are far less positive stories than negative.


Keep your chin up...you're doing all you can right now...good luck with the folforinox.


Vx

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Stephuna,

You are allowed to feel upset angry scared and all those other feelings you know, you are human with a not very nice disease going on just now. I think you are very brave, so please don't be too hard on yourself.

As for the forum, we are here to give you support, if it upsets you to read the posts, don't read them, most of us post on behalf of someone else you are posting about you. We will still be here for you believe me.

Those dropping CA19's sound good to me and 2 months in a row is definitely a downward trend.

Your poor daughter, bless her, just keep up with the cuddles you all need them.

Sending you good luck tomorrow for the furry fox (the name we gave it before we all learnt to spell Folfirinox) unfortunately Google hasn't learnt to spell it yet! take care love sandrax xx

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Just a quick one from me but Stephua, those decreasing CA19.9 markers mean you are responding to treatment. If you weren't, yiurcmarkers would be increasing. I hope that brings you some much needed comfort. And I totally agree, concentrate on your health. If you want to talk, we'd love to hear from you on your thread but you certainly don't need to read about anyone else's woes.


All the very best lovely lady

PW xx

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Hello Stephua,


I know what you mean about crying over sad posts. When I read them I feel very sad for the people concerned and very frightened about the future. I quite often put off posting for a day or two because all I've got to say is something flippant or trite and it seems disrespectful to the people who are really suffering. And then somebody will say that my posts make them laugh, and I think that my silly stories have some purpose after all.


You also say that you don't post because you don't feel experienced enough to offer advice. This forum is to share your problems, news and feelings. It's for everybody. You are very articulate and you are giving us carers valuable insights every time you write. So post whenever you want - and I am so pleased that your CA19.9 numbers are down for the second time.


When I had cancer my husband got very short tempered when I was first diagnosed. A nurse explained to me that some people get very angry at first - but they are angry at the disease, not their loved one. I haven't felt that during his illness, but apparently it's quite common. Perhaps that's what's bothering your daughter. You seem very wise and I'm sure you will handle it so that she calms down and feels more secure.


My very best wishes and prayers to you, I think of you often.

With love

Mo

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Stephua... you make your own path and destiny. Don't let the sad posts get to you, I have already said to you people can last years at stage IV and who knows what is next. Your path with this illness is not defined by the path of anyone else... you already know it is such a different disease in each person. Just don't read them, if I could block you from my thread and only respond to your needs then I would. Please don't ever feel you have to be a support to us, and we have said the same to Ruth. I I do not see how you can deal with this as a patient and even remotely deal with us as well. Not just the fact we are desperate carers, but most of us are nuts and mentally deranged. Obviously not Mo though or Boris! Children are very resilient... mine are changeable depending on how much pocket money I give them. Sometimes I think they feel some benefit through the amount of KFC's and MacDonalds they eat now.


I am glad you are feeling more hopeful and positive. It makes a difference to you and your children. Please stop reading about cancer if you can, you will feel better for it. x

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Hi Stephua,


I couldn't agree more with Dandy, everyone on here has a story, every one is different so yours is unique.


People mostly come to this forum in pain or fear or because they been told they have a disease with an (averagely) dire prognosis. Many patients are older and have other complex health issues which limit treatment possibilities. In most cases they have lived fairly long active and interesting lives. In fact the majority of people who are diagnosed with PC are elderly and have complications, therefore their outlook can be bleak and it is right to discuss end of life care. It is something we all have to face in the end.


Among the younger people (under 75's) like you the outlook is considerably more optimistic as you yourself prove. The range of treatment options is far greater and trials more accessible. You are young enough to see the possibility of a cure one day. Your story is a beacon of hope to others and you should keep posting of your amazing life and family. There is nothing to stop you reading the stories of those who are nearer to the end of their lives than the beginning, but they are sad and can be difficult. This is not where you are right now and hopefully will not be for quite some time, your effort needs to be on keeping well, and getting every scrap of enjoyment and value you can from it. None of us know how long or short our time will be but how we live that life is down to us.


I hope you have been able to get some skiing in, the rest of us are jealous because we are either too old and fat (like me) or stuck in a damp dark UK.


Much love and best wishes,


Marmalade xxx

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Dear All,

Thank you very much for all your kinds words!

I have been feeling more in control this week. Seeing my oncologist really helped. She had a big grin on her face when she saw the CA 19-9 results. She called them 'Super' (with a French intonation). She then proceeded to prescribe me any possible treatment for side effects that she could think of. I went home with a big pile of prescriptions. I had Zophren injections twice a day until Friday morning and hydration drip twice over night. I also took Metoclopramide with every meal. I was nauseous but didn't start vomiting until Zophren injection wore off on Friday afternoon. I was meant to continue with Zophren and hydration for another day but I had enough of the drip and wanted it out, so I could take a shower and go outside.

The oncologist also prescribed an injection to increase the red cell count - Epoetin. It seems that injectable iron didn't do much last time to improve my haemoglobin count. I have been feeling very tired after Furry Fox, falling asleep for a couple of hours after lunch. This is quite unusual for me.

On Friday evening I noticed tenderness in my right arm but the arm looked normal, so I put it down to neuropathy. On Saturday I was woken up by a nurse who came to give me an injection of Epoetin. After the nurse left I looked at both hands and immediately realised there was a problem. My right arm and hand were swollen and purple. Every time I stood up, the arm stared hurting a lot. I called the nurse but she referred me to my cancer centre in Lyon. I called the cancer centre but they said they were closed on Saturdays, so I had to go to my local emergency room. I was feeling very tired and in pain. My husband packed my overnight bag and drove me to the hospital. Everything went very smoothly in the hospital, I didn't have to wait too long. I was rushed to a specialist who performed a Doppler test and found out that my arteries in the right shoulder and arm were blocked, starting from my neck and down to my elbow. I was given a prescription for anti-coagulant injections (once a day for at least three months, with monthly doppler exams and two blood tests per week to check the level of platelets). I asked the specialist whether this would stop my chemo and he said that it would all depend on whether the arteries remained blocked. He thinks there will be a relief in symptoms after 48 hours. The oncologist will have to decide whether to stop the anti-coagulant injections when giving me chemo and whether to give me chemo via a vein.

I was discharged after a few hours which was a relief. I slept for the remainder of the afternoon as was feeling really tired. I am feeling less tired today, I guess the Epoetin injection is working but I still can't go very far. Every time I get up and start walking, my arm starts hurting badly.

Tomorrow I will have to send the results of the Doppler test to my oncologist. I have over a week until the next Furry Fox, hopefully this will be enough to unblock the arteries to allow the chemo to continue.

The one concern I have now is a combination of drugs I am supposed to have next week:

Anti-coagulant - once a day every day

Epoetin - once a week next Friday

G-CSF - once a day for six days starting on Monday

I will be asking my oncologist tomorrow (or rather her secretary) whether these are not mutually exclusive. I remember after G-CSF my platelets level was very high and I read online that Epoetin can cause blood clots.

One thing I want to mention is that thanks to this forum and reading other patients' and carers' stories I was in control and didn't panic when I discovered the problem with my arm. I read about these symptoms on the forum, I suspected what the issue was. This helped me keep my cool. So I would just like to thank everyone for sharing your stories. Even though it makes me very sad to read them when things go downhill, they also make me stronger by providing valuable information.

Wishing everyone a relaxing Sunday afternoon.

x Stepuha

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Hi Stephua that is fantastic news that your CA 19-9 levels are improving but I am sorry to hear you have had such a bad time with your arm and shoulder. Praying that your arteries clear and your chemo can go ahead as planned. It has been a horrible week for you and hoping that you are back on an upward journey this week. Take care and stay strong.

Elaine

X

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Hi Stephua, brilliant news on the markers!


How is the furry fox being administered, do you have a port? One thing I'd like to reassure you on is if the arteries take a little longer to clear, don't worry. We will told that the fox at full strength can also be given once every 3 weeks without it making much difference on effect. In actual fact, my hubby chose to have it every 3 weeks and sailed through it. He only got into trouble when it was stopped.


Much love xx

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Thank you Elaine, thank you Proud Wife, my chemo is administered via a port and it is the arteries above the port that are blocked. It is good to know that furry fox is also effective if taken every three weeks. I sent my results to my oncologist yesterday. Her secretary called me in the afternoon saying that I can take all the injections as prescribed and I can continue with chemo next Tuesday as planned (if blood results are in order that is). I reached a low point with nausea and diarhhea yesterday and feeling better today. Time to get out and start being active again.

x Stepuha

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Hun, I have your e-mail address... my head is up my butt at the moment. Send me a link to your FB and I will link you up properly with us all... but we swear and everything so be warned (Sorry PCUK!). We can help support you more on there if you want it. x

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  • 2 weeks later...

Stephua you will be so relieved that is the FF finished and you can start building up your strength again I really hope you have a good week , Spring is just round the corner and as you said the sun gives you a lift so you can look forward to as you said normal days with the children. What comes next Stephua in your treatment plan now the FF is finished. Is that the trial over? I think you are wise to wait the two months before deciding on nano knife by that time the report may be out and Give you more insight into it all and it will be easier to make an informed choice. Thinking of you and wishing you a great week after your chemo.

Elaine

X

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Hi Elaine,

With this last FF I have completed two cycles of the trial. The trial can continue for 9 cycles altogether (18 months). I am now waiting for the scan on Tuesday 21st and the next CA19-9 test on Monday 27th. My oncologist is away for two weeks for the school holidays, so I will not be able to discuss results with her until the beginning of March. She did say that six months of chemo was the minimum before we could consider other options. So the next step will be Gem-Abraxane for a month starting on February 28th and then another month of FF. Hopefully Prof study will be out by then. I found out that Nanoknife is also available in one hospital in France but they only use it on borderline resectable patients as part of clinical trial to see if Nanoknife can shrink the tumour away from the critical blood vessels to make it eligible for an operation. As I am and advanced PC patient, I don't qualify. It seems like Prof in London is the only person who does Nanoknife on advanced stage PC. I also found out that our cancer centre has Cyberknife equipment, so I want to see if that can be an option for me. There is also a new immunotherapy+chemotherapy clinical trial with IMM-101 starting in our cancer centre any time now, so that could be another option.

The thought of me having to do this chemo trial for 18 months makes me depressed and I am getting impatient.

I just wants these mets to disappear and the tumour to be cut out. Wishful thinking, eh?

'Die monster, die' as my children chant.

Sending love to all patients and carers.

x Stepuha

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