Sunday, 23 March 2014

VanSel clinical trial - Cycle 2 Week 1

One more dose of selumetanib tonight, and Steve will have completed the first week of cycle 2 in the VanSel drug trail.

If I had to describe the last week in one word, that word would be unpredictable.  

The side effects of treatment continue. The skin on Steve's face, neck and chest remains mottled with red areas, sometimes more noticeable, sometimes less so.  But at least the angry inflamed acne-type pimples, scabs and weeping wounds which cleared up during his week off the drugs have stayed away.

The occasional stomach cramps persist, but with no obvious pattern in terms of timing.  The need to take Imodium continues, but not every day.  A packet is in the emergency kit we take with us when we venture out, along with the tube of factor 50 sunscreen and antiseptic hand gel.  

The fatigue continues - Steve says he has lost his "oomph!" We have managed to get out and about a little, but usually find that at some point in the proceedings he's had enough and it's time to rest and/or go home....

Yesterday, for the first time since soon after starting the trial, Steve was physically sick, but felt better afterwards. However, the emergency bucket went back beside the bed, just in case.

All in all, he just doesn't feel right - a bit fuzzy, lacking focus...difficult to pin down in words.

Perhaps the most worrying thing is a continuing cough - not all the time, but usually when moving after being still for a long time, such as getting up in the morning, or after sitting in front of the TV or computer screen for several hours.  Steve mentioned it to the doctor last Monday.  The doctor thought it was caused by catarrh from his nose, which has been runny. We'll mention it again at the next appointment, as the cough seems to be exacerbating Steve's general fatigue.  

As you can probably tell, we are going through one of our feeling rather vulnerable periods at the moment.  We're both concerned that the cough may be meso-related, a sign that the cancer is growing notwithstanding the drug trial. However, we will have to wait for a bit longer to find that out.

A scan appointment has come through for the last week of cycle 2.  Presumably we will get the results in time to know whether he can continue on to cycle 3, if he wants to.  If the cancer is stable, shrinks, or does not grow more than 10-20% in existing areas, that's good enough to carry on.  If the rate of growth is greater, or the meso spreads to any new areas then that's it.  End of trial and more decisions to be made about what happens next....

The side effects of treatment come and go in a random fashion, which makes getting on and doing things a bit difficult for both of us.  We never know what's going to hit him next, when and for how long, so seem to spend a lot of time just watching and waiting in case something happens....

Given the unpredictable nature of Steve's condition, I've been reluctant to start anything that can't be put to one side at a moment's notice, or to leave Steve alone for any length of time just in case he suddenly takes a turn for the worse....he's very good at falling asleep in the chair in front of the computer and then waking up feeling uncomfortable....

However, spring cleaning has begun, as has the bathroom refurbishment (thanks to plumber Keith - not a job we felt like tackling....) We are slowly, slowly making some progress on sorting out the garden and clearing the rented garage of all the items stored there which were ruined by the floods of January and February.  However, it's a painfully slow process when you can only take baby steps at a time.  Nevertheless, we've made a start.  

We even managed to print and frame some pictures for a local exhibition on Port Meadow, one of Oxford's wild green spaces, which is taking place in the Oxford Museum Gallery until mid-April.

We'll be back in hospital for two days next week while Steve gives his PK research bloods over a 24 hour period and has all the usual checks to make sure he is still within the trial protocol before he can continue taking the vandetanib and selumetanib.  More of that soon...

Big hug to fellow meso bloggers Mavis, who is now in the waiting period between having a scan and finding out the results, and Tess who has been having a tough time re-challenging her meso and will be talking through with her oncologist on Monday whether to continue.  Not forgetting all the other meso warriors out there - fighting and living through this awful man-made disease xx

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