Page 9 of 12

Re: 36 yo adv pancr cancer patient treated in France

Posted: Tue Jul 04, 2017 1:27 pm
by 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

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jul 09, 2017 9:18 am
by 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

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jul 09, 2017 12:15 pm
by 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.


Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Jul 09, 2017 2:51 pm
by 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:
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,

Re: 36 yo adv pancr cancer patient treated in France

Posted: Wed Aug 09, 2017 3:01 pm
by 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,

Re: 36 yo adv pancr cancer patient treated in France

Posted: Thu Aug 10, 2017 6:50 pm
by Wife&Mum
Dear Stepuha

What a month you've had. I'm so pleased that you can look back on some good times but the behaviour of your oncologist was downright rude and insensitive. And I'm sorry that Prof was no help, and that all the French doctors disappear on their hols in August. You just don't need all that aggravation.

It sounds like you're leaving no stone unturned in terms of pursuing prospective treatments. I'm keeping everything crossed that you get access to what you want when you want it (the CPI-613 followed by the Atezolizumab with BL-8040) and that you have an excellent response.

Thank you so much for posting Stepuha - there's masses of interesting and useful info in your post about new therapies and you are so deserving of a shot at them.

W&M xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Aug 13, 2017 10:53 am
by Proud Wife
Just to say I'm thinking of you and hope the results on Friday were better than you expected.

Lots of love PW xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Aug 13, 2017 7:55 pm
by stepuha
Many thanks W&M and PW!
Friday's results were as expected. Liver mets grew by 50% by RECIST. Chemo is not working and has been stopped. I have been referred to Phase 1 clinical trial team. The trial with Atezolizumab is expected to start in September and I can't wait so long, especially since they never start on time.
My doctor had a quick chat with the clinical trial team during the appointment. Their proposal at the moment is a trial combining oncolytic vaccine with Yervoy. I found this trial on The idea is that the vaccine will be injected in the liver mets several times. I have five mets altogether. The virus will start multiplying and will hopefully kill cancer cells and leave healthy cells untouched. Yervoy is an anti-CTLA4 antibody which should kick the immune system into fighting cancer cells. The trial is three months long.
There are other trials in the pipeline. Hopefully this treatment will stabilize my tumors. This has been reported in few cases with each of the two treatments individually.
The good news is that cancer has not spread to other organs.
This treatment option needs to be approved by the MTD committee on Monday 21st. There is an earlier meeting tomorrow but my biopsy is not ready. Apparently it should be ready by the end of next week. Fingers crossed, this Will reveal other treatment options.
I feel strangely calm, after all I knew what was coming. It feels good to know that there is a treatment option available, even if it is experimental. The trial suggested sounds at least logical to me.
I had a busy weekend socializing with friends and family which kept my mind from thinking about it all. I also went hiking up the mountain this evening. I have pain in my shoulder which eases up with Nurofen. Otherwise I feel fine and I am determined to make the most of my current state for as long as possible.
Love to all,

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Aug 14, 2017 4:17 pm
by PCUK Nurse Jeni
Hello Stephua,

Thanks for posting your news - I am sorry to hear about this.

Its so good that you are feeling calm, and that you have the option of the trial in the meantime.

It sounds as though you have had an active weekend also, and its nice to hear that you were surrounded by friends and family.

We hope that you have great success in the clinical trial Stephua, and thank you for continually inspiring others who use this forum.

Kind regards,

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
support line: 0808 801 0707

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Aug 14, 2017 5:22 pm
by Veema
Is the pain in the right shoulder? If so, that could be the liver dad has liver cancer and the shoulder pain is a symptom of this.

Good luck with the trial.


Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Sep 04, 2017 3:56 pm
by stepuha
Hello All,
Many thanks to Jeni and Veema for posting on my thread.
Veema, the pain is in the right shoulder under the port. I also think that the pain is caused by liver mets and the doctor seems to think so too although the pain increases if I go swimming, for example, and that doesn't make much sense to me. Doctors don't seem to be interested in investigating this further for the moment.
Here is what happened in the last month:
I waited patiently for the MTD on the 21st of August. At 11 pm on the same day my patience ran out and I sent an email to the doctor in charge of the clinical trials. She replied at 7am next morning saying that they had one place in a clinical trial for me but she would explain everything at the meeting on Friday. I got quiet upset and impatient. I wanted to start the treatment asap and now I had to wait almost another week for the appointment and then longer for the screening process. By the time of the Friday's meeting I would have been without treatment for the whole month.
My symptoms were increasing: pain my in the area of the liver and pancreas, bad back pain, even hiccups.
On Tuesday I sent another email to the hospital saying that I had already found all the information about the oncolytic virus clinical trial and I wanted to go ahead with it asap, could they start scheduling all the screening appointments in order to avoid wasting time. Needless to say I heard nothing in reply but on Thursday I received a call from a secretary who called to arrange a biopsy appointment for Tuesday the following week. She was certain I knew why the biopsy was arranged and could not answer any questions. That confused me even more but there wasn't much I could do except for waiting for the doctor appointment.
On Friday I went to see the clinical trial doctor. She discussed the proposed trial with me and it was completely different to the one mentioned earlier. The trial is a Phase 1 dose escalation study of Emactuzumab and RO7009789 carried out by Hoffmann la Roche, It has been recruiting for a year and have had several dose escalation cohorts. They are starting a new cohort now and I will be in it so I will be receiving a higher dose than previous patients. So far they have managed to achieve stability in some patients but no shrinkage. They recruit patients with various cancer types and they have had pancreatic cancer patients. The doctor believes that this is a good trial for me and that it is better than the one with oncolytic virus, the reason being that the virus is injected into the tumours and for the moment they can't say whether it has any effect on the non-injected tumours. Since the disease is systemic it is referable to have systemic treatment.
The screening usually takes two to three weeks, I asked to complete it asap so that I can stat treatment earlier. It was all done by cob the following Wednesday. I stayed in Lyon for two nights with the pharmaceutical company paying for transport and accommodation. On Monday I had a cardio ultrasound which, according to the cardiologist, was perfect. On Tuesday I had a fresh biopsy (one if requirements if the trial), followed by a CT scan (the scan of the 11 of August was too old), followed by the second scan (the secretary forgot to ask for the scan of the brain and this was a requirement of the trial so they had to do another scan with contrast). I had to stay in the hospital for fluids to help wash out the contract product as it is quite dangerous to have two scans on the same day. When I was finally ready to go back to the hotel room I suddenly started shivering and feeling cold. I asked the nurse to check my temperature, it was 37.4. She wasn't concerned but said she would check it again in 15 minutes. It went up to 38.4. This was a bit unexpected, I didn't feel any infection symptoms. The doctor prescribed a blood test to check for infections and sent me to the hotel room.
The following morning the temperature was normal but infection could not be completely excluded until the blood tests were processed and that normally takes three days.
On Wednesday I had an appointment with an ophthalmologist, followed by more blood tests, followed by a skin biopsy. Although I was happy that everything appeared to be in order I felt rather sore from all the poking and prodding, I really felt like a lab rat. I also had a urine test on Wednesday and that showed some proteins in it so that's another reason to suspect infection.
I was told on Wednesday that my treatment was programmed to start today, the 4th of September. This sounded good but until last minute I could not relax, constantly worried that something was going to go wrong and I wouldn't be accepted.
Well, I have been accepted and have just finished the infusion of the first product. The second product will be infused tomorrow. I am staying at the hospital for three days for observation. If everything goes well, the next infusion will be done over a day visit. I have to come to the hospital for tests and check ups twice a week. The first scan is in 9 weeks. Infusions will take place every three weeks.
The side effects may include: fatigue, oedema of the eyes, skin reactions (rash, blisters) and autoimmune disease. Apparently nausea is not common.
Fingers crossed the treatment will work. Last week's scan showed that liver met's grew again by 58% and the pancreatic tumour grew by 33%. CA19-9 is now in 800 range. There is no spread to other organs although there is a suspicious spot in the stomach area. The cancer is obviously very aggressive so I don't think I have much time left if this trial doesn't work.
Starting treatment feels like a huge relief.
There are a few changes at home. My mother flew home on Friday so we have to get back to normal life of doing everything ourselves. Kids started school today. Luckily whilst waiting I managed to buy kids' autumn wardrobe and organise their school lists and after school classes so we are all set.
A friend of mine visited us this weekend and we had a great time together. I even participated in a charitable dragon boat race as part of my company's team and I loved every bit of it. I have a huge desire to live and although that is not up to me I will certainly make the most of the time left.
Now I am going to imagine that it is a miracle potion that is running through my veins :-)
Sending love and positive energy to all.

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Sep 04, 2017 4:43 pm
by PCUK Nurse Jeni
Dear Stephua,

Thanks so much for the update and great news that you have started on the clinical trial - it certainly does seem very involved.

It is good to hear that you feel happier that you are on active treatment. It sounds like you have had a very busy time leading up to this, with so many tests etc...not to mention sorting the children out - you are a remarkable person Stephua.

I wish you every success on the study.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
support line: 0808 801 0707

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Sep 04, 2017 6:06 pm
by Wife&Mum
Hello Stepuha,
Sending you my love and positive energy back! To echo Jeni's sentiments, you are one remarkable lady. I'm so pleased for you that you made it onto the trial, and wish you the best possible results.
W&M xxx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Sep 04, 2017 7:17 pm
by Sandiemac
Really rooting for you! I so admire your positive attitude.
Sandie x

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Sep 04, 2017 7:55 pm
by Proud Wife
Thrilled that treatment on the trial has started Stepuha. You do have a miracle potion running through your veins. I am visualising it too. I think the whole forum is rooting for you. I am going to keep fingers and toes crossed that you at the very least achieve stable disease. At the beginning of my husband's journey, I was distraught to hear there had not been further shrinkage without realising stable disease was also very good news. Wishing you the very very best of luck, stretching to the moon and back.

Lots of love
PW xx