36 yo adv pancr cancer patient treated in France

[Ruthus]

Hi there

I have been meaning to post a longer response to your for a while now but as you well know time passes with appointments and treatment etc. I have just read your thread from start to finish and there are so many similarities to my experiences and story.

The way your symptoms presented and how you were diagnosed is very similar to myself. I also experienced lots of negative attitudes from GI doctors and nurses regarding my outlook. Then I googled PC on the internet and that didn't help either. I felt totally overwhelmed and out of control. I recall asking the GI doctor whether my tumour would ever become operable and his reply was a firm no. It was totally devastating.

The cancer hospital I am being treated at has a slightly better attitude but still I've experienced negative outlooks and if I hadn't of pursued other options I strongly believe I would not be alive today. I have had to be constantly one step ahead of the game. When I was first diagnosed I read lots of people's stories on this site and I took all the advice I could from peoples individual experiences. I found that the people who seemed to be more proactive into having other treatments such as ablations or nano knife were the ones who lived longer.

I take a whole mix of vitamins which include: bitter melon capsules, milk thistle, a good probiotic, multivitamin, high potency tumeric, high potency slow release vit C, echninacea, Vit D3 drops (for digestion and absorption), Iron, omeprazole and 75mgs of dispersable aspirin for prevention of blood clots. I take all of these in the morning and then take creon with everything I eat. I have no idea if these help but after I had the whipple in May 16 I lost a lot of weight and absorption and digestion is a big issue for me so taking them makes me feel pyschologically better if nothing else.

I felt out of control many times in the early days of Folfirinox treatment. I had been told that there was a slight chance the Folfirinox would shrink the tumour and make it operable but the chances were very low. I had to wait until my mid treatment scan results last March. I hated taking the Folfirinox as after 9 cycles I would literally sleep for 3 days and feel awful. I recall thinking I could not continue with the regime for much longer. My CA-19 markers reduced all the time throughout treatment and my Oncologist said he would not believe it if the mid treatment scan showed the cancer had spread. This was positive as I was worried it would have spread.

I was disappointed after the mid treatment scan as although there was no disease spread the tumour had not shrunk and was still inoperable. It was at this stage I consulted Prof re nano knife and also the Prof in Germany re surgery. When the Professor in Germany said he was confident he could remove the tumour there was no doubt in my mind that this was something I had to do. It gave me such a boost to see both of these Professors as for the first time I had some positive news and attitude. Although I have since developed liver mets I have no regrets having the whipple operation. The primary tumour was taken out and that was such a relief. It also meant I could focus on trying to do something about the mets which for me was two lots of liver ablations in October. The results of my scan in November last year indicated that the ablations and gemcap chemo was working as the liver mets had greatly reduced in size from 1.4 cm to 0.4 cm at its largest and one met had disappeared.

I am now on a treatment break and like you have a scan very soon with results at the start of March.

It sounds like you are on a good chemo regime. I have an appointment today with the Phase 1 Clinical trials team at my cancer hospital to discuss current trials. I suppose this is preparing for further treatment if possible. I will ask about the immunotherapy trial which has been mentioned.

I totally understand when you said you found yourself bursting into tears and feeling exhausted talking about your treatment and updating people. I found that I cried daily for around 2 months post diagnosis. I am now 16 months post diagnosis and don't cry anymore!! strange. It is exhausting though having to constantly update people with where you are upto. I know that my friends are genuinely concerned and I have a set of very close friends who I see regularly and share everything with. However I have had people that I don't regard as close friends offering to go out for coffee and a walk. It's very kind of them but I don't necessarily want to use my precious time with people I wouldn't have gone out with before I was diagnosed. I say no to people I don't want to spend time with and I also keep my responses short when people ask for updates and I don't particulary want to share it with them.

It's difficult though as like you have said you can't plan long term. We have had invites to parties and weddings and we have had to say it depends on my health and we can't say until nearer the time.

I also suffer with anticipatory nausea before treatment and have been sick twice now and the thought of treatment. I usually dose myself with strong anti sickness tablets before treatment. I had a phase of nose bleeds but this seems to have stopped. My hair has become thinner which I'm hoping will stop now I am on a treatment break. I also get dry cracks on the soles of my feet which can be painful. I use a good moisturising cream on these. At times I had to have my Folfirinox treatment 3 weekly and my CA-19's continued to fall so I think it is still effective if given three weekly although I know it's better if it can be 2 weekly.

I reassure myself that I am young and was previously very physically fit so I try and ignore the statistics. I also reassure myself that the statistics may not truly reflect the current picture and there are new trials coming out all the time. We are all individuals and no one's story or pathway is the same. I am praying that your scan results are positive and remember there are other options out there such as nano knife and ablations.

You are obviously responding to treatment which is very positive. Sending you love and hope Ruth xx

[stepuha]

Thank you very much for your reassuring and detailed post, Ruth. It does sound like we have a lot of similarities in our experiences.

I am so happy to hear that you are having a break from treatment. Hopefully the scan you are waiting for will bring you good news.

Sending you love and positive energy.

xx Stepuha

[Elaine123]

Thank you Stephua for explaining your treatment plans to me it makes it a lot easier for me to understand. I get so wrapped up in Petes treatment that I forget there is many options out there. I guess this is going to be a very fraught week for you with the scan and c19-9 marker results due. I hope that you get the best of news. No wonder you overthink with all those options open to you, it would be well worth pursuing the cyber knife to see if that is suitable especially as it would take place near home. I was pleased to see that a trial for the immunotherapy is starting , I have been reading articles about that and it seems that it will be the way forward in the future it looks very promising. The dilemma is what one to choose it seems to be the only way round it is researching over and over the ins and outs of all the options and then making the big decision. I know DG is in shock just now after her Dad and she will be grieving and have loads to do and think about but she has done so much research she may have information that you haven't come across yet that would help you. There is also the vast knowledge base our nurses have and that could be another source of evidence to consider. I really wish you all the best Stephua in making a decision. Have a great weekend with the children . Love and hugs to you.

Elaine

X

[stepuha]

Thank you very much Elaine,

Big hug x

[Proud Wife]

Wishing you the very best of luck with your scan and markers Stephua. I love your children's chants. We used to call "IT" Pandora and in my mind, I would always punch Pandora in the face.

I'm sure it's going to be a tense nervous wait until you get your results but I will be praying that you only hear good news xx

[Dandygal76]

Hey hun, so much to say but let us know the markers tomorrow and we can go from there. I think we need to watch these markers and things need to change. I agree with PW. Not just one change but the trend. All these medics and scientists spout they do not matter but I am yet to see one case (and I have a vast experience in this) that comes back and says... oh it was nothing and it went away. I think the 5% that have no markers and the odd infection case has skewered them into thinking something that does not translate to reality on the ground.

You are young and you have lots of positives and hope. Things are changing. The cancer with dad was gone on many fronts. The pancreas tumour was flat, the original lesions gone.

I am tired now (thank god, as it is 3.50am) but I will catch up and you can e-mail me anytime and I will respond.

xx

[stepuha]

Good evening to everyone,

Sorry for going quiet. It has been a very confusing week and I wanted to wait for my meeting with an oncologist and CA19-9 results before posting in panic. My mind feels like it is going to explode.

Dear Dandy, welcome back. I was waiting for your return quietly as I didn't think it was fair to bother you at this time but you have been missed and I hope you will keep popping in to the forum.

My last Folfirinox recovery was pretty much the same as prior sessions. I stopped being sick on day 9 with Monday being the hardest day. I really need to sort out this sickness issue. I may send an email to PCUK nurses ( I can't call their number from outside of the UK).

Going back one day, I had my scan on Tuesday: overall conclusion - the tumours are stable. One liver met increased by 2mm, another - reduced by 2mm, no new mets, no comment regarding lymph nodes. The radiologist was a bit rushed as didn't expect to have to give me the report on the same day. This was a different scanner to the one used previously. Given that measurements are so small, i believe there is a possibility of human error but not on a substantial scale. If there was a substantial reduction, the error wouldn't make a difference. That scan signalled the end of my pancreatic cancer 'honey moon'. I am obviously not in the miracle category, the mets are not going to disappear with the chemo, this clinical trial is not a wonder combination, so that's plan A out of the window. It is now more likely that I will be doing chemo until the rest of my life. I read more and more about patients who decide to have a break from chemo and this allows the cancer to spread very quickly. Now...I am trying to be as positive as I can but what a depressing outlook!

Trying to re-assure myself I thought of Prof who had previously mentioned that I had 7 mets in the liver. The french radiologists don't count the number of mets. I sent my scan results to Prof on Tuesday eve to his gmail account ( as previously requested by Prof ). As I received no response, I went on the website of the Hospital and noticed that the secretary email address was no longer a hospital registered dress but a gmail account and the landline number was replaced by a mobile. I called the mobile and heard a voice mail which directed me to another mobile number. I tried that second number and didn't get through. I may be paranoid but this doesn't look very professional. Prof replied on Saturday ( I read his email before bed - big mistake). He said that the effect of the chemo had stopped and I had a risk of it spreading further if I did nothing. That was shock number two. I didn't think that stable tumours meant that chemo had stopped working. He didn't ask me for the CA19-9 results or how long I had been on this chemo regime. In January he told me to keep an eye on the trend in CA19-9, so I was waiting for yesterday's blood test to see if it was still a downward trend.

After digesting this piece of news I decided to be patient and wait for my meeting with an oncologist and the CA19-9 results. Yesterday's blood test was good enough to continue with the chemo and CA19-9 dropped again from 141 to 97. The oncologist I saw concluded that the chemo is working and I should continue with the same regime.

This was not my oncologist (she is on holiday) but I decided to test the waters about other treatments with him.

Earlier last week I found out that our centre has the technical ability to perform ablation, microwave and Cyberknife, so I asked the oncologist if I could microwave/ablate the liver tumours. As expected, his response was about the lack of scientific evidence of ablation/microwave being effective for this type of cancer. This is not part of standard protocol, hence it is not recommended. When I insisted saying that at my 36 years of age I was not exactly a standard pancreatic cancer patient and I was prepared to take risks, he said that it could be considered at a later stage. He recommended to wait until the standard treatment was no longer effective. He reminded me that I would have to leave the trial and lose access to Abraxane. In any case, it is my oncologist who has to make that decision. My concerns with waiting until the standard treatment stops working are: 1. The longer I do the chemo, the weaker I will get. 2. If ,when the chemo stops working, the tumours suddenly grow too much, I may not qualify for ablation/Nanoknife. 3. My standard treatment already includes the two main chemo therapies, so once that stops working, what do I do? The other chemo options currently available are weaker versions of my current treatments (i.e Capecitabine is FU in a pill form and that is part of Folfirinox. I won't even mention Gemcitabine).

With all these considerations in mind, I still tend to agree with the oncologist. Based on the overall picture, I don't think that chemo has stopped working, even if it didn't work as well as I wanted. I am going to do two more months on the trial, as previously suggested by my oncologist. Then I am going to persuade her to ablate my liver tumours in Lyon. This will mean leaving the trial and continuing with Folfirinox or its modified version. After the liver tumours have been dealt with I will go for Nanoknife, unless the liver tumours disappear and operation becomes a possibility (wishful thinking). This is my plan B. I need help with evidence to provide to my oncologist. Has anyone heard of studies done in connection with ablation of liver mets for pancreatic cancer? Someone mentioned a study on the same in Amsterdam.

Prof study has yet to surface. I asked him about it again and he ignored my question. I wonder if there is a problem with the study, which is delaying it from being published.

One thing I concluded is that despite all the research, alternative treatments and second/third opinions I need/want to be able to trust my oncologist to guide my treatment. She has the real life experience in treating patients. I can only find theories, studies or personal opinions of patients. I panicked earlier last week because my platelets dropped considerably and I was convinced that the blood thinner was the cause of it. This had been suggested by the emergency doctor who diagnosed me with with thrombosis. I wrote to my oncologist and she replied saying it had nothing to do with the blood thinner. It was the chemo which had caused the drop. I wasn't convinced at first but my next blood test showed that platelets returned to the normal range. This is an example that shows that just because something makes sense to me, it is not necessarily right.

And my final conclusion is 'ignorance is bliss'.

On a positive note, I had 5 lovely days with my family after recovering from FF and before today's treatment. It just felt like we were back to normal life (except for the stress of results). I didn't have any symptoms. We went for hikes, bike rides, took kids to ski lessons, socialised with friends, went out to the restaurants. The weather was lovely and it just felt like we were on holiday (without going on holiday). One can't over-estimate the importance of these very few good days.

I hope all other patients are feeling as well as possible.

Wishing everyone a worry free night.

Love,

Stepuha

[Proud Wife]

hi stephua

I have read your post and I definitely agree with you the treatment IS working. you would get so much benefit talking to the wonderful specialist nurses on here. I would have been lost without them! Can I suggest you email asking if there is a uk landline number you. CAn call. If not, I'm happy for my mobile number/email to be given to you by admin and then I will try to find a way of conference calling if you wish, as a last resort, and I can disappear into a different room although I appreciate you might want to talk In Total privacy which won't be possible. Anything I can do to help, I will . It must be very frustrating but to be able to pick up the phone. You need to be talking not emailing. I'm going to sign odff now as on my phone, can loose all of this and making typos as the screen so small!

Sleep well xx

[Dandygal76]

Hey lovely, that is strange. I asked Prof L some quite hard questions over the last week and he has responded. He was the 1st one to tell us things were turning when the trial said carry on so don't dismiss what is being said and he is very short and blunt usually. I have felt sometimes i need to nudge him as I think he is spread thin. Try a firmer e-mail perhaps? E.mail him tomorrow afternoon.. I suspect you may get the answers you want. I will tell you that I found it better when I had professionals bouncing off of each other. In all our jobs we do not want the scrutiny of another professional. As for this study.. I know it was at peer review but if I look at it scientifically, I cannot see how it can be approved to publish. There is no baseline. Dad came to him after a trial and 12 months into trial treatment, others straight away etc. There is no comparable data. Saying that, I have seen some good results around it... are you on the nanoknife warriors group on FB. Like everything with PC, it works for some and not others. If you ever decide to do it though I am 40 minutes out of London by train so you can stay here to reduce your costs. Those CA19 markers going down though is excellent. You are a strong young woman and everyone stresses around scans and results. Go skiing and live around this - otherwise what is the point.

[stepuha]

Many thanks PW and DG,

PW, I asked the nurses for the landline number to call from outside the UK but they replied saying they hoped that email correspondence would be acceptable, so I guess there is no such number. I must say, I would have been in touch with them more often if there was a possibility to call them. Organising a conference sounds as much of a hassle for everyone involved as writing an email but I appreciate your offer of help and will keep in in mind.

Dandy, I am a member of the Warriors group. One other member posted yesterday about his concerns. Apparently Prof evaluated scans three times with different results and two other second opinion teams disagreed with him. Another person tried getting in touch and mobile numbers finally got answered by Prof who said he was in a transition period and his new secretary didn't work out. Whatever is going on, he needs to get himself organised. I can imagine that without a secretary he can't keep track of everything and things get confusing.

Did you get a letter from him after the consultation? At least I could take that to my oncologist. I never received one after my consultation. I raised a question about it in the latest correspondence but he ignored it.

You are right, I should write to him, give him more information and ask him if he is certain.

I agree that it is better to have professionals bouncing off each other. It worked for me to have the Swiss Professor involved. I am sure I get better attention from my oncologist because I told her I was consulting him. Only I just received a bill for CHF 3k from the Swiss hospital, double what I expected, and the biopsy they took did not result in a sufficient sample to do molecular profiling, so wasn't that useful. What Prof is suggesting will cost me at least GBP40k (or 50k if they charge me as non-resident) and I honestly don't have that money. I am saving but it will take me some time until I can gather this amount. If my hospital can ablate the liver mets, then I will only have to pay for the Nanoknife and that I can afford. I have heard of good results with Nanoknife, mostly so in the US where it is done via an operation (not an option for me with the mets), so of course I prefer to take a chance and try it but there is a lot of money involved, so understandably I want to feel reassured that Prof is the right person to do it. Thank you for your offer to stay at yours, I have some friends living in London who can host me and I also have to get back to France as soon as possible, in case there are complications.

I had my Gem-Abraxane chemo yesterday, it is so much easier for me than Folfirinox. I may just go skiing by the end of the week

[Proud Wife]

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]

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]

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]

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]

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

X

[stepuha]

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]

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

X

[stepuha]

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-journal/therapeutic-implications-molecular-subtyping-pancreatic-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]

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

X

[Ruthus]

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]

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]

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

Edited March 30, 2017 by PCUK Nurse Rachel C
Community Guidelines point 4- Healthcare professionals name

[Guest]

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]

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]

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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