I am having trouble finding time at the moment. I feel hugely overwhelmed with things to do and things I think I should be doing…
Mum stayed with me last week whilst Pete was away but unfortunately she was ill for most of the week.
At the end of the week Pete and I went to London to see yet another well known Prof. This time it was Professor Stebbing.
We sat patiently in the waiting room when Prof Stebbing walked in the front door and said hi to a patient of his. I knew who he was as I had googled him but was a little surprised as he stared at me, almost trying to figure out who I was. It was like he knew me.
We had the pleasure of meeting him and his colleague also from the Imperial College too. He fired a lot of questions at me and a-hemed as if he already knew the answers. Maybe he had googled me?! Ha-ha!
I found him very friendly and sympathetic. I must admit I was hoping for an amazing meeting like my friend had experienced but sadly the appointment was over in half hour when we were asked if we wanted to talk to his colleague about genetic testing.
During our meeting with the Prof he did discuss immunotherapy and his interest in a combination of drugs and immunotherapy and there are some trials, one of which I may be eligible for.
Whilst there, Prof Stebbing said what a great guy my oncologist Prof Harris is but suggested that instead of having Eribulin as my next chemo of choice to opt for Gemcetibine combined with Carboplatin. He dictated a letter to be sent to Prof Harris making this suggestion.
Taken to another room I spoke with his colleague who wowed us with a potential genetic mapping process and how we would be able to discover the mutations in my tumour and see what genes are affected. This would mean treatment could be specifically catered for my individual genetic mapping. This could potentially open up many doors. Apparently it would only take three weeks for this process but first I would need a biopsy. I was under the impression I couldn’t have a biopsy but was informed that I could. So I have left a copy of my ct scan for a radiologist to take a look at and to confirm if this is the case.
Then came the news of how much genetic testing would cost. It would be sent to an American company and the cost would 7500euros. Oh….
So I left feeling like I had more questions than answers. But I always do. I did feel relieved to have met such a nice oncologist but felt disappointed he didn’t have more time. I wanted to pick his brain on everything like Prof Vogls treatment TACE and so on. But then I don’t suppose he would comment much on things they don’t know much about.
So where am I up to?
I have a copy of my ct scan with a radiologist who is going to be telling me whether I can have radiofrequency ablation and a biopsy.
I am waiting to hear back from the ‘board’ to know if I am accepted on an immunotherapy trial with Prof Dalgliesh.
Once I know about the biopsy, this will determine whether I am going to go for SmartGen genetic testing.
All the while I have chemotherapy booked for the end of April. Should I decide to proceed with that, I am now considering Gemcetibine and Carboplatin as recommended by Prof Stebbing. He said that I won’t lose my hair with this combination and can always have Eribulin at a later date.
Zometa and Il2 are still being recommended but at this point in time I am unsure as to where I can get this as Prof Harris it isn’t available on the NHS for triple negative breast cancer.
I am feeling uneasy again. It’s so ironic. I said I didn’t want chemo for a few months and I got my wish. But I am filled with dread as to what my next scan will say.
Pete and I drew a chart yesterday of all the potential treatments available to me. I should be feeling quite happy as I have lots of options available and this could see me through at least another few years all going well. Pete said not to expect the next scan to be good but be assured that the rest of my body has had time to get stronger and be ready to fight again.
I guess I am just worrying and frustrated as I want to know whether or not I have the green light for the next few treatments. Suspense is not good for me…..
But I have to remember I feel well… I look well and I don’t want to miss this time. What I really want is for this all to go away… Ho hum.
The weekend flew by as usual. Yesterday was lovely working in the garden and I was nursing a bit of a hangover. I think I let off a bit too much steam as I drank way too much on Saturday at my friends hen do… but never mind.
We snuggled up in front of the chiminea last night enjoying our extra hour since the clocks changed.
This week has lots to do and I hope that good news is coming…