Radiotherapy done and dusted and trial in progress…..

Treatment number four went fine although I had over an hour delay. We didn’t get home until 7pm… oh well that’s it goes…Still no headaches and only a slight tingling sensation.. Is this normal? How can I be getting away with no headaches?

Yesterday I got up at stupid o clock and got on a very early train London bound to visit St Barts hospital again.
This time it was to sign a consent form for a trial. I was a bit anxious because I had to be back in the afternoon for my very last radiotherapy session. The thing with public transport is that you never know what may happen. I read online the day before that my friend took  five hours to get to London!!

That was why I was being extra cautious and getting to London ultra early before my ten o clock appointment. Everything went swimmingly. There were plenty of seats, the underground wasn’t heaving and I found my way by foot just fine. I had plenty of time so hopped into a lovely cafe and had sausage and egg with a green tea for brekkie. All the while I was texting and emailing the consultant who had arranged the appointment to say I could be seen earlier. Well if you don’t ask…

I didn’t get a reply so I went to the clinic reception half hour earlier and low and behold they had no record of me. Why was I not surprised? All the women on the desk looked at me all confused so I got up the emails on my phone. I then proceeded to email frantically and did get a response. In a short while one of the trial organisers came and introduced herself and said it wouldn’t be long. What a relief.

I then met Dr Peter Schmid who is heading up this trial. We discussed the fact that I wanted Peter there and that my brain is a bit mush like so I may not be on top form. Dr Schmid said it was fine but essentially he got my medical background off me. I really must write out my timeline! It would save so much time and recollection. The trial requires testing my tumour sample that was removed way back when to determine if it expresses the protein relevant, therefore making me eligible or not. Apparently only 1 in 3 are eligible. Bugger. Sometimes even if the tumour results come back negative they take them on anyway because there is evidence that the trial, PDL1, stimulates the immune system and can therefore still have an effect on the cancer. I am  not sure what they will decide with me.  So that’s what I went all the way there at a cost of over £70 for. Worth it I guess. (Travelling peak time is a nightmare!)

I signed a document giving consent for them to contact the Churchill hospital and obtain a sample of my old tumour so that then they can send it to the US and have it tested. The reason for the urgency is that these things can take a few weeks. It clearly will… Then if that comes back positive and we are all systems go, Dr Schmid would like me to start the trial before the end of the year. I like this. I like moving forward and getting on with things. To be honest I really must.

I mentioned to Dr Schmid about having TACE and he said that it wouldn’t work for the lungs. Really? He expressed the positivity for TACE for the liver but not lungs. Oh well we will see wont we?

I mentioned the symptoms that I had been having and that my headaches are not really there only a tiny bit of tingling. He said that ideally I would need to have stable tumours and no headaches to proceed with the trial. Well let’s hope by then my brain is all sorted. I should be having an MRI by then and will know if the radiotherapy has worked.

Also I should be off the steroids by then completely. I contacted Dr Oliveros and she advised that as of now I can reduce the steroids down from 8mg to 4mg per morning for five days then 4mg to 2mg for the next five days then down to 1mg by breaking the tablet up until I see Prof Harris on the 9th December. Brilliant. I am quite excited about this. I can’t decide if the ups and downs, the high energy moments followed by the sketchy shakiness is the tablets or just me? Is it a side effect or is it me ever since the brain tumours?

Anyway back to Dr Schmid. He seemed really nice and very caring. He is concerned for me and said that he feels I should get on either carboplatin and gemcetibine or eribulin as asap if I am not going to eligible for his PDL1 trial. Of course that is my next option. After TACE.

Whilst I was there I got a few messages from two ladies. One lady is currently on the trial and gave me their details. It was lovely to chat with her and I sent her regards to the doctors. Then I also got a message from another wonderful lady who had got her friend with TNBC onto the trial and should have started last month. She sadly passed away before she could start the trial. She said how  lovely Peter Schmid and Louise Lim, the consultant were. I passed on her regards to them both. They seemed touched.

I signed the document and skipped out, back to London Paddington. I was back home by 1.30pm. By now I was absolutely pooped and almost fell asleep on the train. I mooched for a few hours then my lovely sister in law drove over an hour to collect me to take me to the Churchill hospital as Pete had some very important jobs on and couldn’t take me.

We left ultra early and spent a good hour chatting in the cafe at the hospital. I went into radiotherapy early and was seen early! Yay! My last treatment went quickly, although I am sure the radio beam was longer than before. There is such a weird smell and the metal taste from my fillings is weird. But other than that harmless.. well you know what I mean!

We left and drove straight into the rush hour traffic and also the road works around Oxford. This meant my sister in law and I chewed the fat for over an hour! Honestly we must have steamed up the car! Haha! It didn’t feel like and hour and we certainly didn’t get stressed. I was so grateful for her taking me.

I bought the mask that they used on me home. I kind of thought that if I needed more radiotherapy that it would be helpful to keep it, but they said they would make a whole new one in case my face had changed from weight etc… Oh ok.

So that’s the end of that chapter. I am geared up for four days in Germany next week for some hyperthermia and infusions and to see Prof Vogl of course.

I was absolutely wrecked last night and slept like a log after having such an awesome dinner made by my Master chef Bear; seabass, celeriac mash and green vegetables. We are trying to take on board the ketogenic diet but during the day was a bit hard as I had some carbs like bread. I am trying. Honest!

In fact I am trying so hard that I made some flaxseed crackers and flax and coconut bread from the recipe book by Patricia Daly. The crackers are ok. They are not thin and crispy. I must try them again. But the flax and coconut bread is moist. It’s bit thin and not very flavourful but with a topping or dip will be brilliant. Pete gave it the thumbs up! This is great news. This means we can have bread of sorts in the house! And it’s not carbohydrate at all!
Today I feel good again. I feel bright as a button when I wake up and I get on with so much. I have a few bits to do around the house today but I feel like a Duracell bunny. By the afternoon I tend to flag a bit. I definitely feel more alert and can manage and organise things to be done. Then it goes a bit awry.

I realised when I got up the other day that the flights I had booked needed to be checked for going to Germany. Bugger! I had booked them all wrong.. I got on the phone to BA and they were amazing. In fact they saved me money…Phew what a relief. But it just goes to show that my Bear needs to keep a check on me in this brain addled state.

Now I am just intrigued to know what will happen next with my head. I am being careful with washing and creams. I feel a bit itchy I think and I am wondering if my skin and scalp have been affected. I also wonder if in a few weeks if my hair will fall out. (just in time for the ball! Haha)

I no longer have a cough or cold! Yay! I mentioned this to Dr Schmid whilst I was there and he said it is likely the coughing has stopped because of the steroids reducing the swelling. Hmmmmm. I am not convinced. I was told by Prof Vogl that it would take two weeks from the TACE and the cough would stop. I am going with that theory. Let’s hope so. But what I do know it is a relief not to be hawking up all the time. I still have an incredibly sore rib but as I am not coughing so much anymore I can handle it..

All in all things are going in the right direction I believe….

For more information on the trial look up clinical trials :

Light and Love.

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