Well after what seems like an age, it’s all systems go and the first couple of weeks (of cycle 1) have flown by. However, it’s been a bit of a baptism of fire (pardon the pun), but not for the reasons you’d think! As if it wasn’t enough to get pneumonia a few weeks ago, in late April. Which put back my start on the trial, I also picked up yet another chest infection in the first week, I mean FFS can a guy get a break here please. The initial thoughts and diagnoses were that it was the remnants of the pneumonia, but ongoing blood, sputum and poo tests have ruled out any inherent bodily infections. So what’s causing it I hear you cry? (OK perhaps wonder). Well it looks like it might be from acid reflux and the aspiration of my stomach contents during the night.
Well that’s a whole new story and set of tests, question and investigation that will warrant their own blog I’m sure. But it’s likely to be the side effects, or metastasizing of the meso around my body! So for now, back to the task in hand, the MiST trial…
Weeks 1 & 2 – On day 1 it was a 3 hrs drive to the Leicester Royal Infirmary (LRI) which started with the completion of a barrage of tests, (CT scan, ECG, Blood Works, Weight and height, medical history etc.). Like most hospitals of this era and ilk, the LRI’s a rabbit warren of annex’s, extension and additions from years of continuous development. So one minute a test is being done in a bright shiny new section of the LRI and the next in an old part of the hospital. But who cares, as long as I’m on the trial and under the care of the wonderful cancer team of the Hope Against Cancer Unit.
Once all the initial tests were completed, it then became a waiting game. Waiting for the hospital pharmacy to make up my own personal batch of trial drugs for me to take over the coming month, and it appears that waiting is something that I’ll just have to get used to each month. These trial drugs are in the form of 200 mg tablets (taken 2 times per day @ 600 mg doses) and they look like were made from ground up smurfs, or perhaps libido enhancers? You decide. Either way, they get made up specific to you each visit, post blood test results. So whilst waiting for them there was a selection of documents and diaries to read and/or maintain. Two of particular importance, the daily diary and side effects log and the personal oncology card. The latter being for use should any side effects require hospital admission or treatment, lets hope not eh. So by 5.30pm of day one, everything is done it’s time to go.
By go though, I mean to a local hotel for the night, not because we had to, but because it seemed prudent for several reasons. One, we didn’t fancy the 3hrs+ rush hour drive back home but more importantly, I had taken my first dose of the trial drug that evening and if I had any issues or side effects during the night, I wanted to be close to the Hope Centre for support. As it turned out though, the help needed wasn’t for any drug side effects, it was for the crap beds in the hotel. It had to be the worst night of sleep I’ve had for a very, very long time, I think the bed mattresses were as old as the hotel. So the next morning, bleary-eyed, after breakfast and another dose of the drugs it was time to head home. Which was quite a pleasant and uneventful trip, and left me feeling full of hope for the coming weeks of the trial.
Throughout the first two weeks of cycle 1 I have to say, I’ve not noticed any significant side effects, nothing I’d consider a show stopper (long may that continue). In fact, I’d say I’m almost symptom free! Jinx!…
Although there was one particular issue, one that I’d been warned about during the first days’ induction and I’d forgotten about and paid the price for it. Sun burn, yes sun burn. This oral chemo therapy makes you very sensitive to sunlight and requires factor 50 sun block and a sun hat. Well numpty here (AKA me) didn’t use either a few days into week 1, and got my self a healthy glow on my face, neck and hands. Lesson learnt as they say.
Yes the side effects of any significant are more likely to come from the Acid reflux, which are now under investigation with my GP and another local hospital, and my ever growing bone tumour, (who I’ve now named Ripley) which is likely to need some dosing with Radio therapy. Watch this space as they say.