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36 yo adv pancr cancer patient treated in France


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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.


Love

W&M xx

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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 clinicaltrials.org. 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,

stepuha

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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.


Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

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Is the pain in the right shoulder? If so, that could be the liver mets...my dad has liver cancer and the shoulder pain is a symptom of this.


Good luck with the trial.


Vx

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  • 3 weeks later...

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.

stepuha

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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.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

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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

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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

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Steph is

I follow your thread with great interest and wish you all the luck in the world on your trial. I too believe it is a miracle potion. Like you, I really want to live! I have had 4 rounds of Folfirinox, 8 more to go. However my youngest daughter is getting married on Saturday so with the blessing of my oncologist, I have delayed the 5th round until after the wedding so I feel as well as possible on the big day! She was getting married next July but when I was diagnosed in March she decided to bring it forward - we had 10 weeks to plan it, and it has been great fun! Just hope I can eat, as that is one of my main problems.

Anyway, good luck on the trial and keep positive, like you I make the best of every single day xxxxxx

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  • 1 month later...

Hello All,

It is time to update you on my progress. Unfortunately it is not good news.

I had a scan earlier today. The scan showed a considerable progression of the tumours. It also showed a thrombosis on the level of my portacath.

An urgent meeting was arranged with the clinical trial doctor who confirmed that treatment had not worked at all. On the top of her head she mentioned a trial which includes Abemaciclib but it is randomized, some patients get Gemcitabine or Capecitabine. It is a Phase 2 trial. Whether or not I will qualify for it remains a question. My case will be discussed at an MTD meeting on Monday.

On Tuesday I have to go back to the hospital to do final blood tests and scan biopsy to exit the current trial. I will also see a clinical trial doctor and my main oncologist to discuss available options.

There is more bad news, the results of genetic profiling have finally been published. I don't have any actionable mutations. I only have KRAS and P53 which can't be treated at the moment.

I asked to have a celiac plexus block to help with back pain. This will also be discussed. For the moment I am taking Morphine but it makes me very tired and nauseous.

The last two weeks were very difficult. The treatment has really taken its toll on me. With constant high fever and vomiting I lost 6.5 kg overall since the beginning of treatment. I had no quality of life and couldn't do anything with the family. In a way I am looking forward to stopping this treatment.

So all I can do for now is wait for Tuesday and hope they will offer me another treatment. If not, I can try and look elsewhere but I realize that time is running out.

I also asked about going back to chemotherapy and this will also be considered at the meeting. The problem is that I can't tolerate any strong chemo and the weak chemo may do nothing in the current situation.

I asked the doctor about hospice. There aren't hospices as such in France but palliative centers connected to the hospitals. I asked for a meeting with one such center near me. I want to make sure that everything is ready is things turn for the worst. The doctor told me it is probably not the time to talk about hospice if they can find me another treatment that works. Otherwise things will happen quickly.

We have booked a short holiday away in Disneyland Paris followed by a day trip to Paris and kids are very excited about it. I hope I will feel well enough to go.

I am sorry to be the bearer of bad news. I so wish I had something more positive to share.

Love to all,

stepuha

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It's a flippin' shit disease and I am so sorry that things aren't looking better for you. You have always been (to us at least) nothing but positive and the way you have continued to live your life sticking two fingers up at it shows what a determined young woman you are...I hope you can continue to do this and further treatment is offered if that's what you want.


Much love.


Vx

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Stephua, I can't tell you how sorry I am at your news, and how much I admire your refusal to just give up and accept it. It's good to hear that you and the family have a little treat to enjoy, and I'm so glad that you are able to plan happy times for your husband and children despite all the ghastly treatment you have endured.

If anybody deserves a lucky break it's you, Stephua. Veema is right, this is a nightmare of a disease. It sounds so feeble to say that all I can do is pray for you, but I will.

With love, Mo

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Dearest Stepuha


I read your post last night and was too upset to respond, I just couldn't find any words. I still don't have the words (as the rest of my post proves) but want you to know that I'm thinking of you and wishing with all my strength that you get better news over the coming days.


I so hope you get to Disney, I so hope you get more effective pain relief and the nausea and tiredness abate, and I wish so much that a treatment path is found that works for you.


Loads of love and hugs to a most amazing and inspirational lady


W&M xxxx

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Stephuna, Just sending a big ((((hug))) this bloody shitty disease, brings so much heartache it is relentless, it was bad enough losing my husband at 68, at least he had had a reasonably long life but for young people in your position its just devastating.

I do hope you got to Disneyland with your children, and that you all managed to enjoy it, its a magical place for all. I also hope that the news, when you saw the Doctors yesterday, was better than you expected. and they could offer you further treatment options. Even though I don't post much now I keep up with everyone's posts every few days, and am thinking of you all,

going through this, always. Most people post on behalf of someone else which is bad enough but

its you that is having to face this, and you are doing it with great positivity. I just wish I could do more to help, sending love and strength sandrax xx

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  • 3 weeks later...

Good evening to all patients and carers. First of all, thank you all so much for your lovely comments and all your support. It is very heartwarming to read your messages. I am sorry I don’t reply to each of them.

Here is what happened during the last few weeks:

On Monday 23rd I saw my original consultant who reveiwed my blood tests and gave me a ‘go ahead’ for treatment with Gemcitabine/Tarceva (Erlotinib). I was given the first infusion of Gemzar on the same day and given a prescription for Tarceva in tablets to be taken at home once a day.

The following day we departed to Disneyland. The trip went relatively well. Kids had a blast. I couldn’t really do much so we rented a wheel chair from them and my husband was pushing me around with kids sitting on top of me. It worked well at the end and there was no was I could do it without it. After two days in Disneyland we also spent a day in Paris. This was all much more easy going as we had a car and just took a cruise on the Sienne. The weather was lovely and I really enjoyed myself. Understandably, kids weren’t as excited. The toughest part was to drive there and then it rather be driven with two kids in the back. It took us 6 hours each way with traffic. Overall I am happy we did it, happy memories made and lots of photos taken.

On Monday the 30th I went back to the hospital for the 2nd Gemzar infusion. Upon arrival I was told that I didn’t have an appointment that day but the following day, the wrote the wrong day on my appointment card. Eventually the squeezed me in but that meant extra four hours wait for chemo. My red cells dropped further so I asked for the iron infusion. I was given that and Zophren but just before Gemzar they checked my temperature and it was 39.7. So panic started, chemo cancelled, lots of bloods taken, port no longer available for use, I got hospitalized and remained there until today. Bacterial culture blood tests were taken on Monday but not delivered to the las properly so next morning they were not food enough to analyse. Back to more pricking. My veins are very week now and hidden. Every day I had nurses poking and prodding me because tests had to be taken from different places. On Tuesday night they confirmed that staphylococcus group infection was found in the port. I was put on antibiotics. Two days later they were changed as there was no reaction. The fever continued rising every 5 hours with accompanying vomiting to follow. I was transferred to ta different wars for the weekend who didn’t know ay if my history so I had to fight with them about missing prescriptions, timing of the drugs, etc. No one wanted to listen. I was also put on hydration and the following morning woke up all swallen with odeama of the eyes and swallen feet. I kept asking to stop hydration but the answer was no because doctors weren’t around. On Monday I was returned to the previous ward, where I was told that staphylococcus infection was probably not the cause of fever and. In fact, may have shown up as a result of contamination. The new bacterial culture results came in negative. Antibiotics were stopped and corticoïdes started with an immediate positive effect. Fever dropped and I started feeling better. Finally someone noticed my swelling up and stopped hydration. They also prescribed me with diuretics to try and get rid of all that extra 4kg in liquid that I am holding.

In the meantime I started having diarrhea. I can only assume that this is a side effect of Tarceva. I didn’t have this issue before because Morphine constipates me and Tarceva has the opposite effect so they worked more or less on balance so far. More panic, bacterial stool test, etc.

All this time I was just waiting for ‘what next’. Next was a rash on my chest and face, probably also Tarceva related and supposed to be a good sign so I am not going to complain much about that one.

And, of course, they came and told me that I was going to miss another session of chemo and my next session would be in two weeks. This made me very angry. I complained, I cried. I talked to anyone I could and managed to get them to authorize to give me chemo before my departure. Just to clarify re. Infection, the finally concluded that the fever was caused by cancer, so called neoplastic fever ??? More reasons to give me chemo, I would say.

So I am home safely now, I have no idea what tomorrow will bring but I will just take it as it comes.

I hear kids arriving, better give them a massive hug.

Big hug to you all,

stepuha

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Oh what a palava! I well remember Rob telling the nurses that if he were given a blood thinner (standard procedure for all in patients on arrival) it would kill him and the nurses quoting the “not unless the doc agrees and they are not here”. I do hope things improve soon. Lots of love to you and your family xx

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PCUK Nurse Dianne

Dear Stephua,


We wanted to add our thoughts and encouragement to you and your family along with your forum family. You are so upbeat, stoical and unselfish in sharing your experience and also supporting others on this forum at such a difficult time.


Your amazing courage and determination are incredible and we admire you greatly, such a great inspiration for fellow patients at this time.


Our thoughts are with you too at this tough time.


Jeni and Dianne

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