36 yo adv pancr cancer patient treated in France

[stepuha]

Thank you ladies! You always say exactly what's I need to hear.

Wishing everyone a lovely weekend!

X stepuha

[Dandygal76]

Hey lovely. I know we are chatting off line sometimes but we can both be hit and miss (just so people know I am not being harsh below in my views). Also, It is important we vocalise this openly sometimes. I concur with what everyone has said so far. However, you are in a bit of a tricky one with the Ca 19 markers changing and we have to be frank as well as encouraging...

a. of course we have now heard of blips... but they are rare (in my experience). I do not agree with the drs in the extent that if the trend has changed then it does not matter and can wait

b. I think get an inbetween test has to be the same lab and preferably the same scientist if you can get that or at least send the sample to the trial scientist. There are variables between both scientists and labs (so I understand) and consistency is most important. So, if your blip has occurred through a different variable then that can influence your decision making.

c. majority are not blips (if with same scientist)

d. It is a lottery and we are all biased by experience but I have said before to you.. the trend is important.

e. if the trend is up and down then surely one chemo is working and one is not - I would try and find an oncologist and not a scientist to work this out if it was me - is the potential change due to furry fox or abraxane? You need an on the ground decision on this. I know I disagreed with dads scientist support but I am not the only one to experience this.

f. call PCUK to discuss above but hopefully they will feed back.

I am not sure you should be looking for new trial for now... perhaps try one chemo or the other if your markers fluctuate as to what experienced oncologist says? My own biased experience is to guess the chemo that is working (if one is) and go for the other treatments of trial re nano round that now (if the trend continues or was with the same scientist / lab). I have purposely put this here rather than message you privately. It is an experience / research that requires not only a peer review but a PCUK view if the advice is inept.

I am no expert but I think you need to make informed decisions based upon all views (and counter views).

Keep enjoying life my lovely lady. No one is punishing you and pc has no brains. I believe in positive thinking. It is wonderful you are enjoying the things you love. I will message you but treatment two pennies worth opinion are best here.

Much love.

xxx

[raun cesar]

Hi Stepuha, Sorry to of the situation you are in. It great to hear of your holiday, and scan results. I wish you all the best for the chemo. Hugs and Love

[stepuha]

Hi DG,

I am always happy to hear your frank views

a. Of course I know that blips are rare but still possible, especially in the presence of a stent. For the moment there is no trend as such, only one increase, not very substantial but it should not be ignored in any case. I am already doing all I can (changing the chemo regimen) until I get more results and establish a trend.

b. I always use the same lab for my blood tests. I can't choose the lab technician but the lab is the same.

e. I only ever see my oncologist, I don't communicate with the clinical trial team. My oncologist is the Head of Digestive Tumors in my cancer center and I have come to trust her opinion over the last 7 months. She may be very prudent in her approach but I don't think she will give me an ill advice.

The rise in CA19-9 was on Gemcitabine/Abraxane, after the forth month of this treatment. As per the trial, I switched to Folfirinox last Tuesday.

I think the first answers I will get will be after the scan on June 16th. My oncologist says, if there is progression on the scan, we will do another biopsy for genetic profiling.

If Gem/Abraxane stopped working, I will most probably just continue with FF.

f. I will call the nurses when I have some more news. For now I will just continue with FF as planned. I had a chat with a PCUK nurse some time ago. Her point of view was that with this disease it is always good to have some treatment options available, so I should stick to the current treatment whilst it is working and keep other options for later.

I have to say, over the last few months I read a lot of stories about complications after Nanoknife/ablations which are not guaranteed but still very possible and can be quite nasty. I really don't want to put chemo at risk until the tumors have been stabilized. The success of ablation and Nanoknife for stage IV patients is also not very well evidenced. The Nano Doctors I the US and Germany refuse to preform it for stage IV patients and this is in line with what Professor of Radiology in my cancer center is advising. He says it works well for localized tumors but there is too much risk of infection for metastatic patients and I should try and stabilize the tumors first. Apparently, my cancer center is considering to introduce Nanoknife but again only for localized tumors. My cancer center also offers HIFU treatment, SBRT and ablation, so there are options available once the tumors have been stabilized and I still hope they will.

As for the trials, there are some very encouraging results out there for specific genetic mutations but there are still very few treatments for these available. The IMM-101 trial combines immunotherapy with a standard chemo regimen, so it is quite prudent and can potentially offer a benefit over a standard chemo regimen. The problem is that if I wait until both main chemo regimens stop working, then there is no point in joining the trial. It showed positive results in Phase I. I don't think I should discount it completely for the benefit of Nanoknife/ablation. I think all options should be considered.

I had a few tough days last week and I am not completely over the side effects of FF but I am feeling better and it is good to know that in three days I will be back to normal. Unfortunately, I seem to have picked up a cold. Hopefully this will be resolved quickly.

We had my son's 6th birthday celebration yesterday. Another milestone. I spent the whole day running around and was totally exhausted at the end of the day but I felt good to be able to do it and it was a success. I have one very happy birthday boy at home.

As soon as I relaxed in bed last night my nausea and sickness came back, topped up with a nose bleed. A reminder that things are not quite normal.

I have calmed down now, no more crying. It seems that the best way to calm myself down is to reassure myself that what I am doing in terms of treatment is the best thing I could do at the moment.

Wishing everyone a peaceful and sunny week ahead.

Thank you DG for your detailed input and raun cesar do your wishes.

Sending everyone lots of love and positive energy.

xxx

[WifeampMum]

Dear Stepuha

Belated happy birthday to your son!

For what it's worth I think you are going about things in absolutely the right way - staying well-informed, working with your oncologist whom you trust (for good reason) and seeking other expert opinions when appropriate. Respect!

I'm so pleased to hear that you're feeling calmer. Maybe that spell of crying was necessary to get you to this easier state. I don't think it's good to bottle it all up and crying is a good release.

I was interested to see a recent news item about Chemosaturation being used to treat liver mets in PC patients. It's now carried out at a private hospital in the U.K. I don't have any personal experience so can't vouch for it, but if you want to consider another option it's maybe one to look at.

http://www.privatehealth.co.uk/news/spire-southampton-offers-chemosaturation-therapy-pancreatic-cancer-patients-1152286/

[PCUK - apologies if the above link is inappropriate, if you need to take it down I can provide the link off-forum to any readers who would like it.]

W&M xx

[stepuha]

Thank you W&M, your opinion is worth a lot. I will look into chemosaturation, I have not heard of it before.

Xx stepuha

[Elaine123]

Hi Stephua I have been following your posts and praying that FF is successful and that as your body gets used to that you get less and less side effects which will enable you to build on your quality of life. Sardinia sounded so good , now to make positive plans for your next break away. I think you are so right to place your trust in your oncologist but still research other options ,I am sure she is recommending the most appropriate treatment. I can imagine how tired you were after your sons birthday party but seeing how happy the birthday boy was will have made it all worth it for you. Praying that as your body gets used to the FF that your side effects lessen and your amount of quality days increase. Life goes on here on a day to day basis that way I find it easier to cope. The weather has been beautiful so I am spending loads of time in the garden. Sending love and hugs and positive thoughts to you Stephua. Take care

Elaine

X

[stepuha]

Good evening,

Elaine, thank you very much for your warm message.

I wrote a post half way through the month when I was feeling low and then deleted it when I recovered.

Brief recap, I had an allergic reaction to Oxaliplatin, I became res and covered with spots. The nurses stopped chemo and gave me an antihistamin. The restarted the chemo at a slower paste when I recovered. After that a bag of chemo exploded and covered everything in the room. Nurses had to wear protective clothing and masks and spent 40 minutes cleaning the room. I had to go and wash and dry myself five times. I left the hospital at 5.30 after arriving at 8.30, so it was a very long day.

I did a CA 19-9 test half way through the month and it went up from 80 to 84 on Folfirinox.

More recent news:

I had a scan on Friday. It showed that one small met increased from 0.8 to 1.05 cm but the pancreatic tumor and two other mets reduced ever so slightly. Conclusion - stable position. I was very apprehensive before the scan, mainly because I didn't want a repeat of the vomiting situation. The nurse actually changed the contrast product and the scan went very well. I wasn't even nauseous. Overall I spent about 4 hours in the hospital waiting but I got the result the same day which was great.

I relaxed a little bit after the scan but CA19-9 had a surprise I store for me. It raised again from 84 to 105. So that's from the lowest of 54 two months ago to 105 last Monday. It went up by the same amount after both, Gem/Abraxane and Folfirinox.

The weird thing is that I have been feeling really well, the best since the start of treatment. My vitals are all within normal range and I am full of energy.

Last week I did two mountain hikes (5.5 km and 7.5 km up to 2,400 meters), I swam in the pool, rode a bike, did Pilates, I even climbed a mountain on Via Ferrata.

The results don't make much sense but here we are.

I saw my oncologist earlier today. She said that as the scan is stable, according to the protocol there is no reason to change treatment, especially since it is already the strongest treatment there is and there is nothing else available.

I was not happy to just continue with the current treatment. Something somewhere is growing and I wan to know what it is. I asked for a PET scan. There is a very long wait for the scan but she managed to squeeze me in for next Wednesday. As I have to be without chemo for theee weeks before the scan, my today's chemo was cancelled and I returned home. The chemo is now scheduled for next Wednesday afternoon the PET scan.

I don't need to leave the trial to have a one week break, so everything seems to work for now.

I also asked her to do another biopsy to collect material for tumor profiling. Again, there is a very long delay. If I can't get the biopsy in their hospital, I will go back to the Professor in Geneva and try there. She said she was going to try and get the biopsy Organised in France.

I picked up a cold so it is probably not a bad thing to have a week off. It will give me time to recover.

It is very hot here. I look forward to some rain and a drop in temperature. This heat is not very comfortable.

I hope to hear some positive news on the forum soon. If anyone has any to share, please do so.

Love to you all,

stepuha

[Guest]

Hi Stepuha,

It is very hot here too and making people miserable because we are not used to it and cannot sleep. I am keeping a cold water bottle (like a hot water bottle but filled with cold water) in the fridge and taking it to bed with me.

I think it must be very lowering for you to read about people passing on here especially when you are having treatments and feeling anxious. We all know what the odds are with this awful disease especially as many patients are elderly and less able to tolerate treatments but there are always exceptions, always people beating the odds, some for no apparent reason, people who take care of themselves and make their bodies as strong as possible and those for whom surgery and other interventions work remarkably well.

You are a bright and energetic woman so I hope that you can find the motivation to enjoy your life and make it a really good one. I know that is easier said than done but we do have choices. None of us know what is in store for us or how long we have. A disaster can strike at any time, we have all seen that in the last weeks. Your doctors seem to be fully engaged on your case and willing to get things moving for you which is good.

Your fortitude and determination is inspiring for all who visit here and follow your thread. Yes, some have passed and more will do so but at last we are seeing the odds improving. Little by little and this cancer is getting more research attention, faster diagnostics and improved treatments. I don't know what the future has in store for you, no one does but the present is good, you feel well and you must put everything aside so that you can relish this time and tell us all about your adventures.

I hope you have a pleasant evening and that a kind breeze will spring up to cool us all down!

Much love

Marmalade xx

[Proud Wife]

Hello Stephua

Speaking only from my own personal experience, I think you are right to be a little concerned about your rising CA19-9 markers. Most people tend to have their markers in the thousands and tens of thousands. My hubby never did. I honestly can't remember now what they were at diagnosis, I think 95 or 105. They went down to normal during folfirinox and then as soon as treatment stopped, they started to rise by about 10 per blood test, very much like your current trend. They were still only at the very low hundreds by the time he passed. It doesn't matter on the number, it's the trend so for my hubby, to go up by 10 each time was very significant....for him. However, please remember everyone is different.

Now, there could be a very good reason for the increase other than progression and you've also noticed the increase quickly so please don't panic or read anything negative in this post. I just believe on this forum we shouldn't sugar coat or we wouldn't be loyal, trusted forum family members. You've still got time to take action. Where my hubby went wrong was to listen to his oncologist who rated him a 0 -1 on the performance scale 2 weeks before he passed. That's how much faith I had in him but hubby didn't want a second opinion and was happy to go with what he was told so I had to respect that. His markers have been on the up since December 2015 and June 2016 when I lost him, so we are talking 6 months. You are in a totally different position as you want to take action quickly.

I personally get a little upset when I hear oncologists relying purely on scans. I've heard time and time before than scans can be behind time. Others will have more info on that so good for you that you've insisted on a PET scan.

You are handling this exactly right. TRUST YOUR INSTINCT. If you are not happy to carry on with current treatment, would it perhaps be a good time to seek a 2nd opinion in light of your oncologists views? Especially as you are currently feeling very well, apart from a cold. I think there are other treatments to try in the UK - not so sure where you are but I see no reason why not. My husband was offered a 3rd line treatment - something new at that time, after the fox and gem/abraxane but again can't remember the name. I can seek it out if you wish, I started a separate thread on that but... after a 3 month chemo break it was all too late by then and he was not well enough to try it. You are my lovely and your oncologist, in my totally non medical opinion needs to be throwing everything at it.

Please let us know how you get on. Private message me on FB if you want to chat off forum. Stay strong lots of love PW xx

[WifeampMum]

Stepuha

The 3rd line treatment that PW's husband was offered was Onivyde (irinotecan pegylated liposomal formulation). As you're currently being treated with Folfirinox which contains irinotecan - although in a different form - it may not be appropriate. It's usually given as 2nd line after Gem/Abraxane.

I'm afraid that good news is usually in fairly short supply here, quite possibly because the people doing well are too busy enjoying life.

I so hope that you continue to feel well and that the PET scan supports what your oncologist is saying.

Much love

W&M xx

[stepuha]

Thank you all very much for your warm words.

Marmelade - I think you cold water bottle idea is brilliant. I may just try it tonight. According to the weather forecast the temperature will drop next week. I am looking forward to it.

PW - I value your honest opinion. I don't have time for sugar coating. If I do have six months from the moment it started rising than I only have four months left. I have been researching other treatments worldwide but it is difficult to know what route to take without knowing for sure what is going on. I have been sending emails to various clinical trial teams and I am getting replied so at least I am starting a dialogue which should make it faster and easier later, I hope. what worries me is there is such a variety of experimental treatments and clinical trials that I would have no idea which one to choose. It seems that in my current status I would (on the paper) qualify for quite a few and I am willing and able to travel worldwide if necessary but I would need to do some serious research before making any decisions. Once I have the results f the PET scan and molecular profiling I will go back to the Swiss Professor and ask him for his opinion on future treatments. There is also, of course, Prof in London that I can go back to.

W&M - thank you letting me know about Onyvide. I agree that this may not be suitable after FF.

I have received some good news today. My oncologist squeezed me for a biopsy next Thursday the 29th, the day after the PET scan. I must say I am quite impressed with her efforts. I like to see that things are moving and we are not wasting time.

I feel strangely calm today, in control. After all I am doing all I can in the situation. I have also been very productive with sorting out numerous administrative tasks that have been on my 'to do' list for ages. There are still a few to do so tomorrow will pass by quickly.

We have friends visiting over the weekend so that will keep me busy.

Wishing everyone a nice weekend.

I will be back with news next week.

x stepuha

[Quickasyoucan]

Just wanted to say we are behind you all the way Stephua. My uncle by marriage also had pc and had nearly 5 years of v good quality life post diagnosis when he travelled the world and received an mine. Every day science is moving forward and as others have said you have youth on your side. Bon courage !

[Dandygal76]

Lovely lady - let us know the scan results. If you want molecular profiling in the UK my dads trial place does it for what I recall is £1500 - £2000 (and a reputable place). The bonus being if you want to do nano then you can combine the nano and the biopsy (saving cost) and the prof in London is linked on the systems of the trial. We went to have this with dad (at same time as liver ablations) but because of where it was located it was decided it was too dangerous (it would leak into the hepatic ducts and cause spread - that is another dr debate out there!) and so we did not get it done (well they decided on the table not to do it). It would have been too late to get it done for dad anyway, we would not have made the results. There is also some debate as to whether it should be any new growth that is profiled and we decided to try and biopsy a new one. If you want the details then let me know and I will collate all the info and send it to you (and anyone else that wants it). An aside of an interesting fact - I found out only after dad that they do not scan the brain as routine in these tests and they cannot PET scan the brain. I thought we were covered on full scans and so if you get any neurological symptoms - make sure you are getting the right tests. It was our fault though because we thought the symptoms were chemo toxicity. A big aside - but useful for all those fighting to know. x

[stepuha]

Thank you Quickly and Dandygirl.

I am resting in bed after the biopsy. What a week it has been.

My PET scan was moved forward to Monday, so that's all done and dusted. I received my results on Tuesday and it showed no further spread. Three remaining mets in the liver and a pancreatic tumor. All lit up very brightly. I should be happy baiut the result but I am not. The CA19-9 went up again during an extra week without treatment. It was 139 on Monday. The oncologist says there is currently no indication of spread according to the scans so no reason to change treatment but she also says that rising CA19-9 is bad newsman there is no stronger treatment out there.

I raised a question about ablation again and she said they wouldn't do it when CA19-9 is rising, the tumors need to be stabilized first.

I spent sometime thinking about it after I left the hospital and it didn't make sense to me, so i sent an email to her asking to have another appointment with their interventional oncologist and listing the reasons he gave last time as to why we should not proceed with ablation. Since that meeting the situation has changed. The chemo regimen I am on does not appear to be the best option as it is struggling to control the tumors. I don't really want to wait until cancer spreads to other organs as it will be even more difficult to control. The PET scan confirmed that there are only three remaining tumors from 9, so ablation seems possible. The biggest problem is infection risk but couldn't I take antibiotics to mitigate it? I didn't receive a reply and my oncologist is going on holiday, I will only see her now on 25th of July.

In the meantime I contacted a doctor in the French hospital which had a trial with Nanoknife. I asked him what he thinks about the proposal from Professor. He quickly replied saying that Nanoknife is of no interest to me as a metastatic patient and I should continue with chemotherapy. It sounds like a mantra that everyone keeps repeating whilst ignoring the fact that chemotherapy is no longer effective. This is becoming very frustrating. The problem is that I need to find an agreement with them to have chemo after ablations/Nanoknife and to be covered in case there are complications.

I had chemo on Tuesday and that went quite smoothly. Last night I started feeling a sharp pain in my shoulder in the area under my port. The pain became sharper when breathing and turning to the side. I called the hospital and explained that I had had an incident of thrombosis almost five months ago. The doctor suspected pulmonary embolism and sent me off to the ER. I spent most of the night in the ER but they didn't find a cause. They did some blood tests which showed that pulmonary embolism was very unlikely and there were no infections/sepsis. They sent me home stating that as far as emergency experience is concerned, they have found nothing urgent and since I am meant to go to my cancer center anyway today, I should enquire here. I got home at 4.30 am and had to wake up at 7am to get into a taxi. I slept in the car for a couple of hors which helped.

My biopsy this morning went fine. I heard about the risk of spread but in my situation I think it is worth it. I need to stay in bed still until 5pm this evening. If everything is well, I will leave at 5.30pm. I can eat as from 4pm.

The problem is that the results of the biopsy (assuming they have collected enough material) may take up to three months. My oncologist said she would hurry them up but it may still be too long.

I the basis of the biopsy they will look for trials and other treatments, including immunotherapy.

Apparently, the Swiss hospital already confirmed during the last biopsy that I don't have microsatellite instability, which means that Pembrolizumab (Keytruda) will not be suitable.

I am going to have an appointment with their specialist dealing with profiling and these other treatments, I assume this will take place when results are ready.

I noticed last week some spasms coming back in my tummy, something I had had a lot when my stent was initially placed. I suggested the possibility of the stent being blocked but my liver enzymes are normal. I will have an appointment with the doctor who specializes in blocked stents in the coming weeks. I don't have any other symptoms, so this is probably not the cause but it will be good to discuss with a specialist.

Dandy, I don't have any neurological symptoms, i thought of that as well recently.

After all these excitementsI am looking forward to some rest and food. I will continue with the chemo for now until we find some other options. Fingers crossed, I have some actionable mutations.

Wishing everyone a peaceful weekend!

With love,

Stepuha

[Proud Wife]

Hello Stepuha

Thank you for posting, I for one was wondering how you were getting on. I'm afraid I know absolutely nothing about ablation/nanoknife so I'm not even going to start to comment. However, I don't think it's right that you have to wait until 25th July for your oncologist to return from her jollies.

The plan for the future once the results of the biopsy are known sounds encouraging but in the meantime, given that you've got a 4 week wait, would it be worthwhile seeking another opinion? I agree with you about the chemo and not wanting to wait in case it might spread to other organs. I also agree the logical answer would be to take an all round antibiotic beforehand but of course, there's the risk any infection could be resistant and you would need a specific antibiotic, which couldn't be predicted in advance.

This is such a hard one....but I think, if I was you, I'd want to be throwing everything at this now

whilst you are healthy.

I hope by now, you will have eaten and be tucked up in bed at home. Take it easy for the next few days. Sending you masses of positive vibes, love and good wishes lovely lady xxx

[Justamo]

Hello Stephua.

I'm sending you prayers, love, and virtual flowers.

Mo xxxx

[Proud Wife]

And I'm sending you prayers, love and virtual chocolate hearts x

[stepuha]

Thank you for thinking of me, lovely ladies.

You are very sweet.

I am feeling a bit better. I slept a lot after getting home from the hospital.

My liver is still sore from the biopsy. I think it will take a week to get back to normal.

I spent the weekend with friends and family: a lot of friendly banter, good food and happy kiddies running around. It was very helpful mentally which is the main issue at the moment.

My oncologist booked me an appointment with a psychologist. I am not particularly looking forward to a discussion in French on how I feel but I will give it a try.

My appointment for the second opinion re treatment is booked for the 24th of July, my birthday. Swiss Professor is also on holiday. What a great time for the change in treatment!

Oh, and there is some good news. The pain in my shaulder has pretty much vanished. I have no idea why but I can't complain. The pain in the liver is enough. Just in case, I got a prescription for an ultrasound to check for blood clots and I have an appointment tomorrow morning after my blood test. I am not going to do CA19-9 until the end of Gem/Abraxane. I don't think it will do me any good right now.

I hope everyone is well and had a nice weekend.

Love,

stepuha

[Justamo]

Proud Wife thinks that chocolate is the answer to everything.

She might be right.

Stay strong Stephua, glad you're feeling a bit better today. Must have been my virtual flowers that did it.

x

[Proud Wife]

Wouldn't it be a wonderful world Mo if chocolate was the solution!

It may not be the best way to celebrate a birthday but it's a lucky day. I think you are spot on about the CA19-9 markers now. I hope by now the pain in your liver has subsided.

Prayers, love and snicker bars x

[JaneTravers]

Dear Stephua

I have been following your posts with interest and thought I'd like to add my experience. My story so far is on my thread Jane's story. I am recently diagnosed with the dreaded PC and had to have 2 stents inserted, a biliary and duodenal stent as my tumour was pushing into the duodenum. A bit traumatic but got over that! I started my first course of Folfirinox a few weeks ago but unfortunately suffered very bad reaction, uncontrollable diarrhoea and eventually neutropenic sepsis which resulted in a 6 day stay in isolation in hospital. Like you, I am very much a 'glass half full' lady but during that period I began to question things. However, I recovered, came home and my husband and I booked a short break away in Norfolk, I was well and we had a wonderful time! My hair started to come out in clumps so I had my head shaved on holiday and bought a very fetching turban while I choose a wig! I continue to feel well and am loving being in the garden, lots of visits from friends and family, lots of laughter! I start my 2nd round of Folfirinox tomorrow. I was on 80 per cent, my oncologist has reduced one element to 70 per cent to try and minimise the diarrhoea. Out of interest, my CA 19-9 has never been raised, even though my tumour is quite large. When I've queried this with doctors they said they are not always a reliable indication of what's going on, a CT scan is the only sure way to see - interested in your thoughts on this? Anyway, continue enjoying each day, as I do, especially the days when you feel well and good luck!

Jane xxxx

[Veema]

Hi Jane...glad you're feeling well, folfirinox can be gruelling.

My understanding of the CA19 markers is that they are an indication (and only an indication) of tumour activity, its nothing to do with the size of the tumour. So a rising trend in the markers suggest that the tumour is growing or spreading. It's by no means infallible and they can rise with many things, such as inflammation or infection etc., but Stephua is right to be concerned and think about different treatment options.

I hope round 2 is better for you...surprised about your hair coming out as my husband never lost any hair at all.

Vx

[stepuha]

Dear Jane,

Thank you for posting on my thread. It sounds like you had a rough start to the PC journey but I am happy to hear that you are feeling better and ready to attack the next session of Folfirinox.

Veema is right that CA19-9 is an indication only and should be considered in combination with the scan. The problem with the scan though is that it only shows tumours which are over a certain size, micro metastases will not show on the scan. I have read many stories about patients with PC whose CA19-9 never went above the normal range and yet PC was confirmed. I think you are just in this sub-group of patients. I just searched for this on pubmed and came across the extract below which you may wish to have a look at:

https://www.ncbi.nlm.nih.gov/pubmed/28356973

Regarding Folfirinox, it is the best chemo you could be doing (and the article above seems to confirm it for your sub-group of patients, although it is just one of many studies) and it will get easier when you figure out how to manage your side effects and when they get the doses right. Are they giving you an injection of Atropine before Irinotecan infusion? This could help with some of the side effects. I also get an infusion of Zophren (anti-nausea), steroids (anti-inflammatory) and from recently antihistamines (I have become allergic to Oxaliplatin). I also take Emend in the morning before the infusion and get a hydration drip for two nights after at home. This helps to wash the chemo out of my system sooner and to keep me hydrated.

I wish you the best of luck. I love how positive you are despite the rough start. It sounds like you have a great support network which is so important on this journey. Please feel free to ask any questions you may have and if you prefer to contact me personally by phone or email, I am happy to share my contact details via PC UK nurses.

One more thing to share, I have been in touch with Precision Panc program and I would highly recommend that you keep an eye on their website. They are in the process of going through all the regulatory approvals for their clinical trials and expect to need a few more months to finalise everything. About 50% of PC patients have so called actionable mutations that can be treated with drugs already approved on the market or for which specific clinical trials exist. The whole process of the biopsy and genomic profiling may take some time and I would recommend to start looking into it sooner rather than later. This way you will be ready if Folfirinox stops working and will not waste precious time.

Lots of love,

stepuha

[stepuha]

Hello All,

It has been a while since I posted. I have not been a very regular visitor to the forum recently. I hope everyone is making the most of the summer.

Here is what happened since the last update:

I had a very helpful chat with DG. Thank you DG! Some of the points we discussed:

- I am trying to make a perfect decision but there are no perfect decisions when it comes to PC. This is stopping me from making any decision and moving forward.

- Dandy suggested that I contact Prof and ask him to communicate with my hospital so that they can find an agreement on how to proceed with my treatment. I did write to Prof . He wasn't very helpful unfortunately. He just said that there was no point in him getting in touch as my hospital has their own procedures and protocols.

- Dandy also recommended looking into anti-depressants to take the edge off. I had an appointment with a phycologist in my hospital (in French) who after listening to me concluded that I was not depressed but rather anxious and prescribed me with anti-anxiety medication. she suggested taking it regularly but since there are side effects involved (i.e. nausea) i decided against it. I now take these meds during results time and they do take the edge off. They also help me sleep when I have a problem with it. I was also referred to an English speaking therapist in my hospital and will have my first appointment with him/her this coming Friday.

- Dandy also encouraged me to chase the professor of radiology regarding suggested local treatments. Unfortunately chasing has not produced any results for the moment.

I continued with the same course of chemotherapy after the last scan. The total number of treatments I have done is 24 (15 of Gem/Abraxane and 9 of FF).

My last FF was horrendous, the worst yet. I had two allergic reactions to Oxaliplatin. As a result infusion had to be stopped twice. I was given antihistamines before the infusion and twice during the infusion. It took eight hour before they finished with Oxaliplatin. They keep me in overnight to continue with the other drugs and I was released next morning. Two days later I was violently sick (about 18 times in total in one day) and I had diarrhoea several times that day. I became concerned that this could be an infection so I asked my husband to drive me to the hospital. They check my vitals and concluded there was nothing urgent wrong with me. They gave me hydration and gave me a choice of keeping me overnight or releasing me. I decided to go home. I was also given IV Zophren and Metoclopramide. They stopped nausea for about an hour. When I got home I vomited again, probably whatever I got via IV dydration. Symptoms started to reduce on Saturday and finally finished on Wednesday the following week.

The most incredible thing is that on Thursday I felt absolutely fine, totally healthy, full of energy, all the pains disappeared and continued feeling this way until today.

I went to the hospital yesterday for my second FF infusion. After hearing my previous experience and seeing the result of CA19-9 (524) it was decided not to proceed with FF but wait until the scan on Friday the 11th. They didn't think it made sense to make me suffer without apparent benefit. I was actually relieved when they didn't give me FF. I was really dreading it.

So we are in uncharted territory here. I fully expect the scan to show progression on Friday and I think my doctor also does.

BTW, I have not seen my doctor since the beginning of this cycle (beginning of July). She was on holiday at first, then she came back. I was waiting in a queue by her office. She came out a couple of times but called other patients who were in the queue before me. She saw me at least twice but ignored me, turned to other patients to talk to them. This was quite unusual. In the past she would always say hello and smile, say something nice, but not this time. I was then called into another office and seen by another doctor whose main concern was my mood and psychological state. Obviously the whole situation didn't help my mood or psychological state.

Whatever the reason for her behaviour, I certainly didn't feel like she had my best interests in mind. My after scan appointment was originally booked with another doctor but had since been changed to her. So at the moment it appears that I will see her this coming Friday which is just as well since she is going back on holiday for two weeks after that.

It seems that everyone is on holiday in France in August. It is like the whole country stops. I had my blood test done on Monday and there was not a single patient in the lab. Usually there are around twenty. It is like people even stop being sick in August.

Another treatment related event, I had a meeting with a doctor in charge of Phase 1 clinical trials in my hospital. She spent almost an hour going through my biography and family history, examining me and going through all the results. This was a preliminary appointment to prepare for the time when treatment needs changing. She suggested some treatment options. One of them stood out for me (Atezolizumab with BL8040) but it is not yet in the recruitment stage.

I asked he about their success with pancreatic cancer patients and she said that they managed to stabilise disease in one patient. So not that successful then, it seems, although previous trials concentrated on one immunotherapy agent. She finished saying that she hoped we wouldn't see each other for a while as if we did it would be a bad news.

I took this information and results and went to see the professor in Geneva for the second opinion. I saw him originally when I was diagnosed and felt that he was like a breath of fresh air at the time. Unfortunately I didn't get the same feeling this time. After a long discussion on all the treatment options I researched Professor concluded that the advised course of treatment would be an immunotherapy combination clinical trial, i.e. Atezolizumab with BL-8040 that was proposed to me in my hospital but which is not yet recruiting. Professor said that I would probably have a 25% chance of responding to the combination. I was advised to stop chemotherapy if the marker went up again after FF as even if the scan didn't show progression it didn't mean cancer had not progressed. It may be in the peritoneum and in this case may not be visible on the scan. When I reminded Professor that the trial had yet to start recruiting he said that I could wait for a couple of month for it to start recruiting. This really didn't sit well with me. Finally, I started talking to him about the drug I researched, called CPI-613, and the idea of applying for it on 'compassionate use' grounds. Professor concluded this would be a good option whilst waiting for the immunotherapy trial to start. He advised against any local treatments (i.e ablation, radiotherapy, etc). The main reason being that in order to qualify for the clinical trials I would need to have at least one measurable tumour. Getting rid of visible lesions was not sufficient because of systemic disease. It was more important to qualify for a systemic treatment under clinical trial.

So...things are not getting any clearer and decisions - any easier to make. To add to the picture, I am still waiting for the genomic profiling report. I don't really see how we can make a decision on the next treatment without the genomic profiling report. I just hope it will be ready by Friday.

I did apply for the compassionate use of CPI-613 as advertised by Rafael Pharmaceuticals on their website. Two weeks later I received a very blunt reply asking me if the form had been completed by my doctor. Despite this not being mentioned on the website, the form apparently had to be submitted by my treating doctor. I sent a request to my doctor by email who forwarded it to the Phase 1 trial team who actually reacted pretty quickly and submitted a request two days later. We have some progress! I think this was the first time I felt like someone was actually listening to me reacted to what I had to say. Now, just because the application was submitted doesn't mean it would be approved. It turns out my hospital doesn't know how to deal with drugs under compassionate use terms. They asked Rafael Pharma for guidelines. So I guess if Rafael Pharma do approve the application I will then need to research all the details about compassionate use programme. BTW, the reason I am so keen on this drug is because in Phase 1 trial it showed a 61% response (including some complete response) in metastatic pancreatic patients in combination with mFolfirinox.

There are other interesting agents in clinical trials, i.e. napabucasin and AM0010 which showed success in early trials in combination with chemotherapy. Unfortunately, I wouldn't be able to qualify for any trials which combined new agents with chemotherapy as I have already had two main chemotherapy treatments.

There is an interesting trial which recently started in the UK: NCT02758587, GN15ON133, Study of FAK (Defactinib) and PD-1 (Pembrolizumab) Inhibition in Advanced Solid Malignancies (FAK-PD1). Unfortunately I would not be a suitable candidate for the initial phase of the study and they already have a waiting list of candidates. I could join the pancreatic cancer extension group but this would only open early next year after completion of the initial phase.

I have been feeling lately like I have been banging my head on the wall. No matter how much research I do and what information I find, it doesn't seem to make any difference. It only makes things more complicated and frustrating for me. I just want some cooperation from doctors and finally some good news and some hope. Hopefully I will be taken more seriously after progression is confirmed on the scan. I have a right to be referred to a multidisciplinary team which I intend to request on Friday.

I just can't understand how I can feel well and healthy and have vitals in the normal range and be at the point where treatment is no longer working and there aren't any proven treatment options. I just don't feel like I am going to die soon. This is so weird.

Anyway, enough of that. Sorry for the rant.

I had some exciting adventures as well last month. My company paid for me and my husband to go away for a weekend and so we did. We went to Palma de Majorca and had a wonderful 5 day holiday. I feel wonderful, ate delicious food, swam in the sea, cycled around Palma and went out on a boat to some secluded bays. It was exactly what I need.

My mom has been staying with us since the beginning of July. She has completely taken over all the household chores and cooking. We have been eating some very tasty Ukrainian food.

Last week we took the kids to the Drome region of France for a couple of days. We visited a safari park, an Ideal Palace and an adventure park. We then dropped them off with their auntie who has been spoiling them rotten ever since. Earlier in the month we had a friend of family staying with us for a couple of weeks. He is fourteen and gets along very well with the children. So kids have had a busy and happy summer so far and we are certainly trying to make the most of good weather and school holidays, making happy memories as recommended by the forum family.

I hope the rest of the patients and carers are doing the same.

Sending love to everyone,

stepuha