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

Re: 36 yo adv pancr cancer patient treated in France

Postby Proud Wife » Wed Mar 01, 2017 8:52 am

Whatever you want my lovely. All you would need do is call me on one phone, I'd put you on speaker and then dial the nurses from another phone. It sounds as though you would very much benefit from speaking to the experts here but of course I don't want to put you in an awkward position. It's entirely up to you but I'm here to help if you wish.

Much love xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Elaine123 » Wed Mar 01, 2017 9:37 am

Stephua I have been waiting to hear about your results. I am at an early stage of experience about pancreatic cancer with Pete therefore my knowledge is limited. I would have thought from what our oncologist has told me that if the tumour is stable and the markers are on a downward trend then the treatment is working. I asked about what we want to happen at Petes three month scan and they said stable and markers to be going down. Sorry Stephua but that is the limit of my experience. I am so sorry you have had such a rotten stress filled few days. I think emailing the nurses will maybe ease your mind a bit and give you a better idea of options and how to approach your dilemma . So happy you the five days " nearly normal " time with the kids and enjoy the family time. We become so thankful for times like that eh ...I know I am that like that. I do hope the nurses can give you some good advice . Thinking of you and wishing you clearer options Stephua. Stay strong and take care. Loads of hugs.
Elaine
Xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Dandygal76 » Wed Mar 01, 2017 10:19 am

Hey Stephua. I have had e-mail correspondence with Prof L. I won't post whole message but I expressed that people are being let down and he said... "yes I agree, I am looking for a new PA and the change was outside my control". He has asked me to call him which I will do later. I know there are debates either side of Prof L but I do believe in him and what he thinks, even if it does not work for everyone (What does with PC?). And this is me when dad died 3 weeks after his treatment and so we never had the chance to see any success or otherwise. When you have so many people e-mailing you and asking of you at his level, the lack of PA is a huge thing. He also works for the NHS as well as a Head of Radiology. Hang in there. I will message more later but I am in multiple meetings today. x

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Wed Mar 01, 2017 8:59 pm

Thank you ladies, I always appreciate your support.
I received an email from Jeni at PCUK with an alternative number to call from outside of the UK, so that's one issue sorted.
I sent an email to Prof just now. Hopefully I will hear from him soon. It is good that he now knows that people feel let down and hopefully he will sort it out soon. I am looking forward to hearing what else he has to say.
In the meantime wishing everyone a good night!
x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Elaine123 » Thu Mar 02, 2017 8:35 am

Stephua that is great you have a number for the nurses I think it will be great for you to have the back up of their wide experience and knowledge. They always reply quickly which could save you from worrying for days on end about something you are not sure of. Thinking of you. Hugs.
Elaine
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stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Thu Mar 02, 2017 10:39 am

Thank you, Elaine. I received a reply from Prof. He said that he had used the wrong wording. The chemo is controlling the disease but there is no further reduction/disappearance. He says I don't have much of a choice except for staying on the trial for now. He recommended a PET scan to see how much tumour activity there is and I will request one from my oncologist next week. He also promised to write a letter to my oncologist. He said that timing was very important in integration of ablation with chemo. He doesn't want me to miss the opportunity because if disease starts progressing, ablation may no longer be available.
So this confirms that I should continue with the trial but at the same time start discussing ablation with my oncologist.
I like it when things are clear, even if not for long.

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Elaine123 » Fri Mar 03, 2017 8:22 am

Pleased to hear that the prof got in touch and explained it fully to you. As you said if you have all the facts before you then it enables you to move on and plan your next actions such as getting a PET scan and speaking to the oncologist about ablations. If things are not clear then it all just becomes a muddle and you then become unable to move forward. Good luck with your oncologist meeting and be very firm about where you want to go from here in your treatment plans. Once you have all your questions firmly in your mind why not run it past the nurses prior to your oncologist meeting just in case they can add anything to it. No harm in having the most comprehensive facts to put before him. Love and hugs
Elaine
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stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Thu Mar 16, 2017 9:24 pm

Good evening All,
I was so inspired by the positive post from Ruth that I decided to go on holiday during my chemo free week, so we are taking kids out of school and preparing to set off in our car to Tuscany this coming Saturday. I can't express how excited I am about this trip. I even bought a new phone today to make sure I can take lots of pictures. Pictures have become scarce in the last few months, so it is time to catch up. Thank you, Ruth, for your inspiration.
Before I leave I thought I would write a quick update on my treatment. I managed to have all three of my Gem/Abraxane treatments this month. My blood results were quite low after the first of the three treatments, so I was worried that I would have to miss a session of chemo. My oncologist prescribed me G-CSF which, I must say, works wonders when it comes to improving the white cell count. My liver markers are still higher than normal and I don't really understand what is affecting them but the oncologist doesn't seem to be worried for the moment.
When my oncologist came back from holiday I had a long discussion with her about the scan and CA19-9 results, future prospects and other treatment options. She got rather stressed during this conversation. I brought up Prof , his suggestion that there are possibly two more mets in the liver and proposal to perform three ablation procedures on the liver and Nanoknife on the pancreas. Her main concern was that it was too early in the treatment to do any local procedures. She is happy to discuss these in future depending on my progress. I couldn't get any concrete answers as to what exactly I needed to achieve with my results for her to consider me being ready. She did mention, however, that ablation procedures can be done in France. She can refer me to a radiologist who can do it and even though they are not usually done for this type of cancer, it is my right to choose what I want done, so she will be open to discuss these.
As to the results of the scan and CA19-9, she was happy with them and confirmed that current treatment was working.
Following my second email to Prof , he sent me a letter to confirm what we discussed. In this letter he inserted some results of studies on Nanokife. The references appear to refer to a combination of various studies, including that published by the US Dr who specialises in Nanoknife. The results show that for metastatic pancreatic patients median progression free survival after Nanoknife is 6 months (95% CI 4.9-7), median overall survival after Nanoknife is 15 months (95% CI 7.3-22.6). It is good to see some data for metastatic patients, even though it is not specific to Prof in London.
After I calmed down from the drama of the results I somehow reached a transformation point in my approach to chemo. In the beginning I thought that chemo was a temporary measure and I could therefore bare it for a while and then get back to enjoying my life after it was finished. Now that I realise the possibility of having chemo for the remainder of my life I want to make the most of what I have. So instead of taking it easy in the first few days after chemo, I no longer wait to feel better. I just get up in the morning and get on with things that need to be done or things I want to do. I have been spending a lot of time outside, cycling, walking, running errands, playing with kids. By about 8pm I am wiped and have to sleep for about at least 11 hours. Luckily the weather has been amazing. As a result I found it easier to recover from chemo and my state of mind has improved dramatically. After all, if I am busy doing stuff, I don't have time to feel sorry for myself or think about death.
Physically I have been feeling well. I have some insignificant nausea as a side effect of the chemo. Unfortunately, I have been going through the torture every morning with very painful and bleeding piles. Earlier this week I had a procedure done to see what the issue is. According to the doctor, there is what he describes as a stone as a result of piles, which is causing the issue. I have been prescribed medication (including anti-inflamatory, antibiotics, suppositories) but so far the problem remains unresolved. If it continues in the same manner I will be referred to a Proctologist who will then snip this stone off. I am translating this from French, apologies if this doesn't make sense.
I also had a Doppler ultrasound to check the state of my thrombosis in the arm. The result of that was positive. Everything is clear, there are no blood clots in view, so the blood thinners worked. Unfortunately (or fortunately) I have to continue with injections for the moment, at least for two more months. I am covered in bruises from these injections which is scaring kids a bit but otherwise I can live with them.
So, I guess, overall I am on the top of the PC rollercoaster and I am going to try and make the most of it.
I saw some positive data on improvements in the overall survival of metastatic patients:
http://www.cancernetwork.com/oncology-j ... tic-cancer
There is also a new immunotherapy trial that has started recruiting in our cancer centre. It is good to know that there is another option available when/if chemotherapy fails.
Sending love and positive energy to all fellow patients and carers.
x Ira

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Elaine123 » Fri Mar 17, 2017 8:42 am

Good morning Stephua what a lovely uplifting positive post and Tuscany sounds just what you need right now. You seem to be planning ahead and in doing so widening your options . It is brilliant that you are at the top of the roller coaster so enjoy the view from there which will make where you go from here in your treatment much clearer. I wish you and your family the most wonderful time in beautiful Tuscany. Hope to hear of your adventures on your return. Loads of hugs
Elaine
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Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Ruthus » Fri Mar 17, 2017 10:14 am

Hi there - I'm so pleased I've given you inspiration to get away on holiday. That's fabulous and will be so good for your well being. After many tears in the first few months after my diagnosis I seemed to have a psychological change where I just got on with my life and did as much as possible. I don't care about risks anymore and just do it.
I've recently been in touch with Professor ? and am booked in for further liver ablations on the 29th of March. It's good to read the statistics you have posted (well not good really when you compare it to other cancers and prognosis but it shows positive improvements with this cancer). I recently went to a conference in London involving research into PC and they talked about discovering several subtypes of PC adenocarcinoma which if identified may lead to more specific treatments.
It's difficult to know when it's best to have nano knife or ablations but Prof states he prefers to do these whilst the tumours are small. I know trials are coming out involving immunotherapy and this is exciting. It would be good for you if you can have ablations in France without cost as it is costly.
Enjoy your holiday and I hope you stay on top of the roller coaster for some time to come. Ruth X

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: 36 yo adv pancr cancer patient treated in France

Postby RLF » Fri Mar 17, 2017 3:50 pm

Have a great holiday! And yes from what you wrote Carl has had 6-7months cancer free after each ablation he's had, and that has kept him going for the last 3.5years, we were told that it isnt usually done for pancreatic cancer too, but when you are young and fit and healthy why wouldnt you push for all the treatment options you can! Plus like Ruth said, if the tumours get big they aren't ablateable after a certain size though I think thats something like 5-7 cm from memory, might be more that that but it's what is lodged in my memory

Hope you feel better after your time away, and you have to take your treatment in your own hands. Doctors will only do what they have always done, which means the outcomes will always be the same. Get a second oppinon if needed, im so glad we just did!

Rob
x

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Wed Mar 29, 2017 2:35 pm

Hello everyone,
Thank you for your comments, Elaine, Ruth and Rob.
My week away was wonderful with a lot of adventures, warm weather and great food. I put on 3 kg whilst I was away, so I am now starting to feel a bit heavy. I was amazed how well I felt. As long as I took my Creon, I felt completely healthy. I was running around Florence and Siena after the little ones on their bikes. Cars are not allowed in the center and walking would not be a long lasting option for them. I spent most of the week moving which felt great. Most importantly I was busy so didn't have time to worry about my CA19-9 results which I received on Monday. That's my new trick of dealing with anxiety - keeping myself busy. My blood results overall were positive and I was very happy to see that CA19-9 dropped further from 97 to 62. I got so excited that I decided to go jogging, not so easy, it's been a while since I practiced jogging, and my body was a bit achy but it really gave me a boost of energy.
Somehow this time I didn't have anticipatory nausea before my Folfirinox session yesterday. I was given Lorazepam before the start of the chemo which put me to sleep for the duration of the chemo and my journey home. I was also given Palonosetron for nausea and vomiting. Apparently it's effect lasts for 5 days. We shall see whether it works any better. I already started vomiting so I am not too optimistic.
My piles have improved during the week off but not completely disappeared. I was asked to be referred to a proctologist but was told that I wouldn't be able to do the operation now anyway, so I have to try and manage with medication.
A family member sent me a link to the clinic in Frankfurt, specifically Professor XX (post edited by moderator). I contacted him and he replied with suggestions of regional chemoperfusion and regional embolisation to start with followed by thermal ablation using LITT. I will send him my scans at the end of April and we can then discuss in more detail. Has anyone had experience with any of the above procedures?
There is some good news regarding the results of a Phase IIB study carried out by Erytech Pharma from France evaluating GRASPA in combination with standard chemo for metastatic PC patients. Hopefully this will translate into Phase III study soon. And then of course there is Precision Panc project in the U.K. which also sounds very promising.
Further I heard that the main Dr Nano in the US is due to talk at the AHPBA's annual meeting starting today. Apparently he is going to discuss the best timing for performing Nanoknife. I look forward to reading his presentation.
There are reasons to be hopeful and positive.
Wishing everyone as peaceful week.
Love
Stepuha
Last edited by PCUK Nurse Rachel C on Thu Mar 30, 2017 11:14 am, edited 1 time in total.
Reason: Community Guidelines point 4- Healthcare professionals name

Marmalade

Re: 36 yo adv pancr cancer patient treated in France

Postby Marmalade » Wed Mar 29, 2017 5:23 pm

Thanks for the update Stepuha, so pleased to hear you had a good break. Florence is such a wonderful city. Terrific news on the CA19-9 markers, we love a downward trend. Sorry to hear about the vomiting as things were going so well up to that point, all you can do is hang on in there and keep trying different things. Thanks also for the trail update and US Nano information.

I send you love and hopes that you are feeling less nauseous, M xx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Justamo » Wed Mar 29, 2017 11:35 pm

Stephanie, you and Ruthus are inspirational. I'm so glad you enjoyed your break and spent time with the little ones.
Take care of yourself.
Love, Mo

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Elaine123 » Thu Mar 30, 2017 10:16 am

Hi I was delighted to read that you had a wonderful holiday Stephua and managed to run around after the little ones. Fantastic news about your markers coming down that was uplifting news to come home to. The Frankfurt professors treatment sound promising it is good to discover someone doing different treatments and well worth looking into. So happy you had a lovely family break. No wonder you put weight on Italian food is just soooo good. Take care and stay strong I hope your vomiting has subsided. Hugs
Elaine
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