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.