No treatment this week

Since receiving the positive results three weeks ago I’ve been experiencing several, frustrating side effects. I’m finding that I’m getting very stiff, particularly in my legs and my back when I have been sat for any length of time, but also in my fingers and my neck. I keep feeling drowsy and nodding off in front of the TV. I’ve also been having cold sweats and shivers, mainly in the evenings which hasn’t been nice at all.

But the biggest problem I’ve had is with eating. My appetite has completely disappeared! I’ve lost at least half a stone in the last two weeks. I literally just never feel hungry and don’t even fancy the snacks and comfort food I would normally manage at any time. All I’ve been able to have is yogurt, strawberries and Complan shakes. I’ve been trying a few mouthfuls of whatever Andy has cooked for dinner, but sometimes just the smell puts me off eating it. I’ve also been vomiting a bit.

My nurse referred me to the dietitian at the hospital who has prescribed me some meals replacement drinks, similar to the ones I had to have post-op last year. This time I have to have three of the drinks a day. Hopefully, if nothing else, it will maintain the nutrients I need and stop me losing weight.

On Wednesday I was due to have treatment, but received a call from one of the nurses to say I wasn’t allowed to because my platelets and haemoglobin were too low. While I had her on the phone, I reported all of the symptoms I’d been having (plus the fact that my temperature has been fluctuating over the last two days), she spoke to my consultant, who asked to see me the following day. He has put me back on the low dose of steroids (he took me off them three weeks ago), prescribed me a course of antibiotics and a course of antifungal tablets. He is going to see me again in two weeks. Hopefully things will have returned to normal in time for my next scheduled treatment on 10th July.

Long Awaited CT Scan Results

After three months of immunotherapy treatment, last week was time for my CT scan. Since Easter I have been feeling better and better. My energy has come back and I’ve been able to do more and more. Andy and I have been going out a lot more and I’ve climbed the stairs of Layer Marney Tower (eight storeys!) and walked around the Suffolk Show (more than 10,000 steps!). My consultant has been very happy with my response to the treatment in terms of how well I have been feeling and the lack of side effects (which he says can be horrendous and even fatal). My tumour markers in my blood tests have gone down and my haemoglobin remains stable.

Up until this point, my treatment has consisted of Nivolumab and Ipilimumab, but will, from now on, only be the Nivolumab as what they call maintenance treatment.

Last week I had my CT scan (I haven’t had one for six months); We had to wait until this week to get the results. I didn’t get my hopes up as all previous meetings about scan results have delivered devastating news. So, bracing ourselves for more bad news, we went into the consultation room. But this time it was good!

My tumours have all shrunk! Some, according to my consultant are a third of the size they were! The consultant then went on to try to explain, in layman’s terms with diagrams, how the drugs work and how a multitude of characteristics of the cancer must fit certain criteria for the drugs to be effective. Due to the fact that the drugs only seem to work on certain types of cancer (fitting the criteria) and that the side effects are often so awful that treatment has to be stopped, I am blessed because the treatment has been so effective for me. I owe a huge amount of gratitude to Bristol Myers Sqibb for allowing me to have this treatment for free. Also, they have offered to fund my treatment for the next two years or until the disease progresses further, whichever happens sooner. 

So, overall, things are looking up right now and it’s good to feel more positive about life.