Wednesday, 13 August 2014

Stepping into the great unknown

Had my meeting with my oncologist today on my situation and I can honestly say that over the past 2 weeks or so since being told I was Stage IV in September last year I have been the most uneasy that I've felt. I don't like not knowing what lays ahead for me and things are progressing and changing at the moment that I've got no certainty. When I was on Vemurafenib although it only worked for me for 9 months I knew where I stood and that it was working for me. Now my tumours are growing again, new ones are cropping up and there's no certainty that the medication will work for me. I'm impatient at the best of times and this unknowing is not a good feeling. The new meds I'm on has a 10-15% rate of tumour shrinkage and a higher % of stopping any new tumours growing which I guess versus a limited chance of survival without it I should be hopeful for. There really are so many positive stories of Ipilimumab and how it's helped people globally that whilst it doesn't work for everyone there is that chance it will do for me.

So onto today. My pancreatic tumour has grown from 2.9cm x 3.5cm in May to 4cm x 5.5cm in July which whilst I think shows that Vem had stopped working by May as the tumour didn't shrink from my Feb to May scans that is stiill a 65% increase in size in 3 months. It's inoperable due to it's position as well but the registrar wasn't overtly concerned by it describing it as neither sizeable nor small so I guess I can take some positives out of that. As mentioned in my last post I have had 5 new tumours crop up in my brain which I really don't like. Whilst my pancreatic one may be more serious the thought of having something growing in my organ that ultimately controls me I just find really really disconcerting. Two of these tumours are small to moderate in size (measuring 9mm and 2.9cm) and three are very small. Or at least they were when I had my scan 3 weeks but I'm not sure if they've grown in that time as I didn't have them in May so they are growing at some pace. 

I was meant to have heard back from the Cromwell Hospital in London regarding whether I'm able to receive Gamma Knife surgery on these brain tumours and eradicate them either fully or reduce them sufficiently in size but in the 3 weeks since my previous appointment I haven't heard anything. This is going to take some time as I need to arrange an initial consultation with the specialist, they will then need to rescan my brain and then after that will need to ascertain whether I am able to receive the treatment and then after that I need to be booked in to receive the treatment so this is likely to take a number of weeks I'd expect. Just a case of knowing where I stand and whether I can receive it or not is all I want and then I can plan things this summer.

So all in all not one of my more positive posts. I've got the go-ahead (dependent on any erroneous blood results) to receive my second dose of Ipilimumab on Monday which is the new medication I'm on. I haven't received any side effects at the moment but apparently the more infusions you receive of it the higher your chances become of side effects - I don't fancy being in hospital with colitis so hoping that does crop up! The beneath picture is me receiving my first infusion. Sitting in a chair for two hours with a needle stuck in you really wasn't that hard. Plenty of Sudoku and reading!!

And as I've now been advised against flying for the short term (those coming to Lisbon do not fear I will get there by boat if I need to!) I need to look at train/ ferry holidays so who fancies a short city break or road trip soon. I need a holiday!!!

No comments:

Post a Comment