So I started all my test to see if I'd be included in the trial. I had my bloods, bp, height weight ECG and CT scan done. Tests and hospital visits felt like a big blur in my life. It's was all happening too fast and all at once. Having a hot English weather was nice but it all added to my exhaustion. CT scan was amazingly easy as there was no needles. They ve used my picc line ( my blood port) instead of injecting me. So I was very happy it was pain free.
Liver biopsy was the last and most painful test. They gave me this beautiful gown in the super posh clinic to wear......
Than they wheeled me in my bed thru hidden tunnels of the Central London I never knew existed and finally I got to the biopsy room. I was surrounded by number of little gadgets, computers and an ultrasound machine. Doc came around and introduced himself and cracked on with a procedure. I was slightly worried as I was hoping to have some sort of sedation. I ve asked if I was having any and he said no. Not even happy air I said and he said no, not that I'm aware of. Suddenly fear came over me... He did ultrasound first, pain free so far. I could see my liver and all the cancer within it. It felt weird looking at the live images of my biggest enemy at the present.
Than he took out the needle and injected my skin and into deeper capsule of my liver. Very painful. You could feel it going thru your skin. I shouted " this is worse than dental anaesthetics "!
While waiting for Local to kick in he asked me some " passing time" questions one of which was what I did for living. I explained I was a dentist to which he replied that since the begging of the week he had quite a few dentists on which he performed the same procedure, biopsy of liver cancer. Oh dear I thought, what's with the world. Cancer seems to be everywhere. Even in the morning when I read online papers there are at least 2 cancer stories each day and those are the people who have made it to the papers! What about a thousands and thousands of cases who never do?
So he continued with a procedure. Now, up to this point I've been looking at the ultrasound screen and live images it was producing but when he pushed a big biopsy needle in between the ribs and into my liver while i was still watching it all being done I nearly fainted. I turned my head away and asked if they wouldn't mind talking to me about anything, anything at all so I would not faint. So they continued talking about silly things until the procedure was over. They needed 9 samples of my cancer for this trial and these are the results of my biopsy.
My CT scan showed that my cancer has not changed or grown by much. Since my last CT scan and since having a chat with nutritionist late May '14 I started eating more or less anything I fancied, whatever my body craved for even ice cream and other sugary snacks I so much avoided ! I thought to myself I might as well enjoy food that I liked if my life was gonna be a short one. I must admit on my latest scan I expected cancer would have spread much further, especially in my liver and would be all over my body. I was so relieved when I could see on my biopsy result that that wasn't the case.
Also for this trial they needed bloods to be done as well. They seem to test everything possible in my blood. I had 11 vials of blood taken and those are some of my results:
My haemoglobin was on a low side and few other things as well. However, I didn't seem to feel any different. I guess you d expect tiredness, to feel light headed, short of breath etc with my results but I felt the same. As if my body has gotten used to the lack of major blood components.
This is me on the finial day of testing:
So far I had height, weight, BP, ECG, bloods and liver biopsy done. This trial included people who expressed PDL1 marker and those who didn't.
Ive anxiously waited to hear if I was included in this trial. I didn't know until the very last day. Apparently sponsor needed to know if I had any progression of cancer while I was on a hormone treatment. I was placed on a hormone treatment only as an interim holding off before my 28 days washout out period (where they need my body to clear off any medication I was taking ). Also they ve requested my scans from my hospital to compare with the most recent scan. Luckily, my lovely doc Jason to which Im so grateful and proud to have as my doc sorted it all out in no time.
So finally after everything, every piece of big puzzle was collected they told me I was included in the trial.
I was very happy about this but part of me was very scared of this unknown treatment. I didn't know how I was gonna react to the drug but most of all I was worried about having severe allergic reaction that some people have and I was worried if i ll survive that.
This was the pic taken by my mum on a day of infusion. I was petrified. Yes you get a first class treatment but after all you re a guinea pig
Before the drug itself, they took some more bloods (5 blood vials ), they gave me paracetamols and drowsy antihistamine. Within a few seconds I was so sleepy and I found it so difficult to keep my eyes open. I brought some stuff to read while I was in this hospital but I really didn't need any of it.
Moments before the infusion I was chatting to other patients. Some of them told me about their life a little, their failed relationship due to cancer, others told me about their cancers, etc, etc. Everyone was amazingly so open with me and it kind of made me happy. There was no "bullshit" talk that most people tends to have when they meet. This was very open talk about real things, real life that was happening. One person said his cancer has been stable since the start of the trial which was April 14 and the other one told me he had reduction of 50% of his cancer and has been on the trial for about 5-6 months. All of this was very encouraging to me.
However, within the next hour, chatty and loud clinical room turned into a very quiet room. We were all given our drowsy antihistamine than made us very sleepy. Its like some kind of movie or something, very unreal and funny in our bleak reality, filled with hopes of extended life.
Infusion seemed to have gone really well. I felt ok. I had to wait for two hours afterwards to have my ECG done.
I was given loads of meds on my discharge. Anti sickness meds, in case I have diarrhoea meds and hydrocortisone cream in case I have a little bit of rash on my body.
This was my clinical room before I got discharged. More or less everyone had left home:
I was told I should report any side effects that I might have and was given a number to call day / night.
I must admit I didn't have major side effects. Apart from feeling tired the next day and a little bit of sore throat, everything else seemed fine. I was told sore throat would have been expected side effect as its immunotherapy drugs and flu like symptoms in the first few days was considered normal. I was told to avoid sun exposure as my skin would burn more easily and to prevent delayed effects of sun exposure such as rash and painful skin condition that some people have developed.
So I continued to be ok and with no problems for the first week.
They needed to see me more often in first few weeks so they can do observations and bloods.
In the meantime I have developed a bit of the allergy to my picc line dressing. Little blisters came up on my skin just under the dressing. They have immediately changed it to sensitive skin dressing for me.
It happened twice so we all know its certain dressing fault !
So I was happy that I didn't have major side effects to the drug, I was happy drug didn't make me feel bad like chemo did. Other patients have told me the same. Some of them were on a death bed as to say before the start of the trial and now they feel normal. I must admit this was the first time I felt normal myself. This was also the first time when I had a days that I have forgotten that I had cancer. I kind of felt normal again even though I knew I wasn't and could never be "normal " again. If it wasn't for my picc line on my arm I think I could easily pass as a normal, healthy 30 something year old woman.
Chemo made me so unwell almost straight away and this drug didn't. I can only hope that it works as well.
We all take our life for granted at the times. It takes for us to become ill to appreciate what normal is again. It takes for us to be very close to death to appreciate life again. We all take life for granted and people around us. I ve done it myself. I got absorbed in my job, I craved for success and recognition in life, I craved for status in life and like many of us I craved material things. When I got ill none of that was important any more. What was important is my family, my friends and all good people around me. No one even cared if I was a dentist or a person with no qualifications. We re all the same.... and eventually one day (hopefully NOT in a near future !) we will all go in the same box.
So, while I can I intend to fully enjoy my life, appreciate little things around me and live in hope that my clinical trial drug will work and give me a little more of extended life Im craving for so much ...
An amazingly foamy coffee I had the other day :)
