Results!!!

It’s been a few days and I didn’t mean to keep everyone in suspense. I attended my clinic appointment on Tuesday fully expecting to get my scan results from the scans I had done last week.

Pete met me there and we didn’t really get time to talk or be nervous as we were called in straight away-thankfully. Sadly Prof Harris wasn’t there so we saw Nicky Levitt, whom in the past wasn’t my favourite consultant. She seems very airy fairy and sometimes a bit aloof which isn’t helpful when asking questions. But I have seen her recently and actually quite like her. I get the feeling they are starting to understand me and she said things like, ‘Someone like you knows their body, so you know whether something is right or not.’ This surprised me.

Anyway back to getting the results. As per usual she wasn’t prepared; the computer wasn’t on and she had to wait, then search for my results then get the printer working… It wasn’t a biggy so I just sat patiently.

The news was fast and simple really.

The MRI of the brain showed further improvements in the tumours and no new ones. Woohoo! This is a relief. It’s hard to know if I am getting symptoms sometimes with the little flashing light I get in my eye but this really did fill me with hope.

The CT scan showed further reductions in the tumour in my hilar lymph region and all other lymph nodes are now under a centimetre in size! Yes!

All lung metastases have remained stable or reduced in size in fact several lower lobe lesions have resolved completely. The rest of the lungs good with no effusions or pleural thickening.
The adnexal lesion, which they said could have been cancer in my ovary, is no longer there! Boom!
The T8 and T9 lesions are still sclerotic therefore non responsive.

Overall; a bloody good outcome. Of course I never seem overly excited or astounded. I am and was, thrilled with the news but I always hope for more and wish if only it was a bit better. What is making it work? Can I make it work better?

I knew there had been a good response and some reductions in my lungs because Prof Vogl had already told me but I desperately want those gone in my lungs. Now I know I can hear Pete crying out, ‘Some of them have gone completely!’ and yes I am chuffed to bits but what about the lymph nodes and those few big ones! I want them gone. If I could get rid of the lymph node tumours then I could have laser surgery by Prof Dr Rolle in Germany. With them in my lymph the doctor refuses to do the surgery.

My immediate thought was that I must also go back to Frankfurt and have more TACE with Prof Vogl. It clearly works. I am still reticent to go and have more infusions with Dr Seibenhuner but never say never.
So my next move in this game is that Peter and I are back to Germany next week. I am going to see Dr Nesselhut for my usual NDV, Dc therapy and hyperthermia with IL2, but this time he is going to be adding another drug to it and I have asked all my doctors and they all say go for it. Dr Nesselhut said not to have any chemo in the meant time. It’s a leap of faith as I believe in combining treatments but in order for this to have a chance then I will listen to the Doctors advice. I am filled with excitement and fear as I don’t want things to go in reverse but I have a good feeling.

We said to Nicky, that we had been told by the doctor at St Barts when we were there in October, that when things looked stable and as long as there were no new ones that I could have gamma knife treatment on the tumours in my brain. Quite out of character, Nicky picked up the phone and requested my scans be sent digitally to St Barts. She said she would get a letter sent to them too and make a request for me to have gamma knife ASAP. Pete and I were quite taken aback. I am not sure how quick a response we will get, if any. But I will keep on the case with the secretaries and make sure I get seen. It would be amazing if I could get those brain mets gone!

We discussed the fact I had postponed/cancelled Eribulin. She said she had a hunch that it would be accepted by NICE in a few months as it’s too good to let go of. This would be good if I ever need it.
So that’s that… another result and another push forward to making things even better.

This week has gone really quickly and it’s sad that Mum goes home on Saturday. We have had fun shopping and today we had our nails done. She has also been teaching me to knit too. I think I am getting there although reading patterns is like reading a foreign language. But I already have a repetitive strain injury! Haha! My forearm is huge and swollen and I am in a lot of pain. Can you believe it? Hilarious….

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