This past week has been a tough one. I had a CT scan and blood tests on Monday and then had to wait until Friday to have my follow-up consultation with my oncologist. I have also been waiting for the results of a genomic sequencing that was being done on my original tumour to see if we could find any mutation to target. Knowing that I am experiencing symptoms of the disease now and that it is clearly progressing, I have been more anxious this week than normal. I thought I was keeping it all together until I broke down into tears in the office this week over a silly misunderstanding with a colleague. I was mortified and had to explain that it was due to all that was on my mind and not the work situation – not one of my Wonder Woman days!
Time rolled on and I had my follow-up appointment with my oncologist yesterday and Trend and I left with a small glimmer of hope. My oncologist’s take on my latest scan was there is clear progression of the disease in various places, particularly around my kidneys but that the rest of the diseased areas are largely stable. My tumour markers from my blood tests were also stable. The genomic sequence that they did on my tumour was largely inconclusive so there are no gene mutations that they can target with chemo or immunotherapy at the moment. However, the one gene mutation that they could identify is the KRAS gene and it’s one that’s receiving a lot of attention at the moment as I believe it is common to many cancers. My oncologist thinks that there could be treatments coming out in the next 6 to 18 months that could be relevant for me.
We also discussed the fluid that is being produced in my abdomen (which is how my disease manifests itself) – without going into too much detail, it’s currently coming out of me at the rate of 100ml per day. I have to think that it’s a good thing that it’s coming out rather than building up as it did last year prior to my last op when my tummy reached full space-hopper proportions. However, it does present some real discomfort issues for me in terms of feeling like I need to go to the loo all the time (and having to always be close to one) as well as having to get up several times through the night. He knows of an injection used in other cancers to inhibit secretions and he has seen one case study of it being used in a patient with PMP with some success. He is going to try to get approval to try it on me with monthly injections.
We didn’t discuss my new hernia under my stoma – I need to deal with that separately although I know that my surgeon is not keen to open me up again. Luckily, it’s not causing any major problems right now. I can exercise and jog with a hernia band on to give me support.
So, although the disease is clearly progressing, I didn’t get the sense that I am in any immediate danger, and there is a small grain of hope in the development of the KRAS mutation treatments in the coming years. We agreed that his job is to work with my surgeon to keep me alive long enough for the treatment to be available for me.
So I have a plan. And for now, that’s enough.