Sunday 26 October 2014

Last week of cycle 1 and a bit of a downer

Winge alert....

For various reasons, this last week of Cycle 1 of the AZ0424 clinical trial has been a bit of a downer, so if you are here expecting all things positive probably best look away now and return when we have bounced back (which we will).  

The doctor's remark last Tuesday that the lump on Steve's chest is probably the cancer growing has overshadowed the week.  Not the sort of thing you want to hear when on a drug trial which you hope will have the opposite effect.  

Although we have seen it on scans and it has knocked us for six emotionally, up until now Steve's mesothelioma has not impacted on him physically to any significant degree. However, the lump is different. You can see it and touch it. Thankfully it doesn't hurt. This makes us question whether it is the cancer growing, or something else...not that we have been able to identify what else might cause a lump of this size which is hard to the touch and not malleable.  If the doctor is right, then we now have very tangible evidence - and a constant reminder - of his disease (as if we needed one).  

The other big downer is hair loss - a side effect of the trial drug.  The hair on Steve's head started coming out in odd strands last weekend, but is now shedding freely.  He had put off washing his hair, but when he could leave it no longer the result was what he feared - lots of hairs including large clumps left in the bottom of the bath. His eyebrows (a very expressive part of his face) are also thinning.  There are hairs, hairs everywhere....

I'm sure Steve will come to terms with it, as so many others have had to when loosing their hair as a result of cancer treatment.  However, it is taking time to adjust to his new look. Time to go shopping for hats?  The hair loss is bound to get worse before it gets better.  The advice we have found online about coping with the impact of cancer-related hair loss on self-esteem seems to be aimed exclusively at women rather than men, which wound Steve up a bit. It's a people thing not a gender thing, isn't it?

The other side effects of taking part in the clinical trial are ongoing, including tiredness and effect on his digestive system.  In terms of fatigue, mornings are generally not too bad (relatively speaking).  However, from lunchtime onwards, Steve feels lethargic at best.  More often than not, he dozing or sleeping...In terms of his digestive system, the loud stomach gurgles continue but now accompanied by a build up of gas which makes him feel bloated and uncomfortable.  This is now affecting his appetite, which is a concern given his recent weight loss.  

Then there is the cough....Not all the time, but when he has a coughing session, it often makes him feel sick.  The bucket is back beside the bed for emergencies.

The significant deterioration in Steve's mum's health has been another cause for family concern.  She is now receiving 24 hour nursing care in Bristol.  Every time the phone rings, it flashes across our minds whether this is the call from the nursing home we are preparing ourselves for...

Naturally, we would like to visit her more often and spend more time with her.  However, it's difficult now Steve is on a drug trial with frequent hospital appointments plus the side effects of the trial drug, including fatigue which makes long sessions behind the wheel not such a good idea.  

Now the start of Cycle 2 of the drug trial is imminent, the thought of three consecutive days in hospital does not fill us with joy.  Mentally, it's looming large even though only one visit is scheduled to be a long 12-13 hour shift...

Overarching all of these concerns is a mix of feelings about future treatment options.  Immunotherapy is an area of clinical research which is proving very promising for people with mesothelioma, including fellow meso warrior Mavis who is doing brilliantly on her drug trial. Well done Mavis!  We are thrilled to read of significant tumour shrinkage and hope that many more people will be able to benefit from taking part in trials of this immunotherapy drug and similar ones.  

However, every time I research immunotherapy trials, my heart sinks when I read that people with a medical history of autoimmune disease - including arthritis, like Steve - are specifically excluded from taking part.  It feels like someone is shining a torch showing you the way ahead out of a long dark tunnel, but at the same time putting a barrier in the way to prevent you heading in that direction.  Heartbreaking and frustrating.....

OK. Rant over.  It hasn't all been bad.... 

We escaped the worst of the weather when the remains of hurricane Gonzalo crossed the UK at the start of the week....

To our amazement, some of the plants in the garden are flowering, whilst others are holding on to their blooms. Colour in the garden this time of the year is a bonus we weren't expecting....

Steve and I were delighted that our photos were included in a feature about our photography friends get-together in Heidelberg last month, which was published in a German newspaper.  Thank you Isa for setting it up!

Steve's picture of other photographers is bottom left, mine - an architectural abstract - is bottom right (ignore the credits - the journalist didn't get it quite right!)  

We seemed to have survived our flu jabs with minimal side effects, so we are set up to tackle the worst of the winter illnesses although hoping it won't be necessary.  

I'm hoping that by my next post, the good news will outweigh the downside. Life is a bit of a roller coaster at the best of times.  We will be on the up again soon I hope.  Big hug to all the meso warriors around the world, especially those  on the down slope of the roller coaster x

Tuesday 21 October 2014

AZD0424 clinical trial start of Week 4, Cycle 1: lump

Back to hospital today for Steve's weekly check up at the start of the last week of Cycle 1 of the AZD0424 drug trial.  

Weight, BP, ECG all OK.  Blood and urine samples given for testing.  A chat with the doctor about side effects; gas/
bloating/gurgling stomach (ongoing), pimples on face and neck (now less noticeable) and hair loss (accelerating). Nothing serious enough to warrant stopping taking part in the clinical trial.

We also took the opportunity to ask him to look at the lump on Steve's chest which he first noticed before the clinical trial started, after lifting very heavy bags of cement out of the car boot and into the garden.  At the time it was painful and we assumed Steve had pulled a muscle.  The pain has long since stopped but the lump remains, not protruding quite so much but flattened out and with a wider circumference.

We had drawn Dr Iannis's attention to the lump at the pre-trial consultation.  He looked at it but didn't seem worried. Today, a different doctor examined it and measured it to keep tabs on any future changes.  In an almost a passing remark, he said it's probably the cancer growing.  We had considered this as a possible explanation initially.  However, the absence of pain and previous doctor's lack of concern meant we had pushed it to the back of our minds.  As a result, today's rather casual statement took us both a bit by surprise.  

Steve is due a scan in a couple of week's time so the results should clarify whether the lump on his chest is the cancer growing through the chest wall and rib cage.  In between then and now, we assume it will be measured and monitored at the weekly visits to the Early Phase Clinical Trial Unit.  

It seems a bit surreal to be writing in these terms when Steve has no pain in that area...or anywhere else for that matter. For that we must be grateful.  However, it reinforces the urgency of finding something that will slow down the meso, stop it or shrink it.  Whether AZD0424 will do any of those things remains to be seen.  We live in hope.  It's certainly doing something to his body, if the side effects are anything to go by!

Thank goodness the Medical Innovation (Saatchi) Bill now has government support.  Here's hoping it will become law by spring 2015 and open up options for people in Steve's position to consider treatment with drugs that show promise in trials but are not yet licensed, without the medical profession being put off using such innovative treatment for fear of litigation.  

Sunday 19 October 2014

Family matters and side effects: Cycle 1, week 3 AZD0424 clinical trial

The last week has been dominated by family matters and some side effects of the drug trial...

Our trip to Bristol to visit Steve's mum after her health took a turn for the worse last weekend turned into an urgent search to find her a specialist nursing home as she now needs constant care. Luckily, one such home nearby had vacancies. We were able to visit to check it out while we were in Bristol. Over lunch with Steve's brother also visiting on the same day, a decision was made and she was transferred to the new nursing home on Friday. Quite a relief for all concerned...

On a much more enjoyable note, daughter Katie and partner Ed have been staying with us for the weekend.  Always lovely to have family visiting: an incentive to tidy up the house; a welcome distraction from clinical trials and care homes; a good reason to go out for a meal, as well as a chance to catch up on each others news face-to-face and show off the "new" garden, which met with approval.  Another relief!

Week 3 of the clinical trial and more side effects are becoming apparent.  The gurgling stomach continues, usually associated with an uncomfortable bloated feeling and gas.  As over-the-counter digestive medicines (Gaviscon and Bisodol) are not proving to be very effective, we will now try some alternative approaches to dealing with this side effect... and see what the doctor says at the next appointment on Tuesday.

The other side effect is hair loss, which has only become noticeable over the last couple of days.  It's not falling out in handfuls, but strands come out easily if Steve runs his fingers through his hair.  Stray hairs are appearing on the pillow and in the bathroom (and are probably present in less visible nooks and crannies). The upside of this side effect is that Steve doesn't have to shave very often....

The pimples which appeared on Steve's neck and face - in amongst the whiskers - are still there, but do not appear to have got any worse.  Which is a relief.

Tiredness continues.  The best time to do anything is in the morning, when he's still fresh from a night's sleep.  Later in the day, Steve is liable to drop off in his chair, or take himself off to bed for a nap. 

That said, at present the side effects are manageable and liveable with.  Here's hoping it stays that way.  And that the trial drug is also slowing down, or preferably halting, the cancer growth.  Still early days...the scan doesn't happen until cycle 2, about six weeks into the trial.  I imagine that whether Steve continues on to cycle 3 in late November will be determined by the results of that scan.  That's still a long way off, so no point in getting wound up about it now....

Where ever you are, whatever you are doing, have a good week...especially the meso warriors around the world x

Tuesday 14 October 2014

AZD0424 clinical trial - out of week 2 and into week 3 of cycle 1

Steve has now finished the second week of the AZD0424 clinical trail.  We were back in hospital again this morning for his regular tests before starting week 3 of the first cycle of treatment.  

The usual chaos on Oxford's roads in peak hours is now exacerbated by roadworks in the city centre and the return of all the University students, on foot and cycles. However, after the frustrations of a trip across town, everything went smoothly at this morning's hospital appointment.  

It only took two attempts to find a vein that was willing to give enough blood for a sample, and there was no need to wait for the blood test results or to see the doctor.  We hope this is because everything is going well.  It seems to be...

The good news is that Steve has started to regain some of the weight he has lost recently and his appetite is healthy, in spite of the gurgling stomach.  We also noticed today that he wasn't puffing after climbing the stairs to the Early Phase Trials Unit, which happened at other recent visits.  

There have been side effects which are probably related to the trial drug, but nothing too difficult to deal with.  Steve has been feeling tired, so has taken a nap during the daytime.  A few spots have started to appear on his neck and face (mainly where his beard grows) but nothing like the awful rash he developed during the last clinical trial he took part in.   

In my last post, I referred to the benefits of physical activity. I had plenty of that last weekend, walking around Berlin with a group of photography friends.  Very wonderful it was too!  

Steve would have found the pace hard going, but I will take him there at some point in the future, I hope.  Something to look forward to, when he feels up to travel abroad and has time in between hospital appointments, assuming he stays in this clinical trial for a few more cycles when hospital check ups become once a fortnight, rather than weekly.

In the meantime, we are planning to go to Bristol to visit Steve's mum who is very poorly, and are looking forward to a visit next weekend from our daughter Katie and her partner. In between, we ought to set up the rain water harvesting system on the garden shed (there has been a lot of rain recently!); put away the summer clothes and bring out the winter woolies.  And process some more of the photos from Berlin ....These are from my iPhone :-) 

Here's a big hug for ALL the warriors, especially Lou in Australia who is going back on chemo to deal with a build up of fluid in her chest; Nancy in the States who is recovering from major surgery and grieving for the loss of her much loved dog, and all taking part in clinical trials like Steve, path-finding for those who follow.  Not forgetting the carers, families and friends of the warriors....You are all very brave, very wonderful people x

Monday 6 October 2014

AZD0424 clinical trial cycle 1, week 1: Gurgle

It's the end of Steve's first week on the new clinical trial.  

We've been watching for side effects, but otherwise carrying on with whatever we've had to do...three days going to hospital and, around those appointments, more planting in the garden, including bulbs to enjoy in the spring (always optimistic!) and a day trip to London in the car to help our son move some large and bulky things from his house share to new accommodation....quite a demanding day, with no opportunity to eat properly.

Steve has felt tired...but then so have whether his fatigue is a side effect of the trial drug or activity it's difficult to say.  Probably a bit of both.

What has been noticeable is the gurgling noises coming from his stomach.  Quite musical and rhythmic - more Philip Glass than heavy metal, even though its quite loud! We have just spoken to Finn, the trial nurse, and it seems to be quite common amongst those on the trial.  We will have to stock up on stomach calming medicine now this seems likely to continue....

Another noticeable thing is weight loss.  Steve's weight has now dipped below 60 kilos. When he was first diagnosed in 2009 it was about 70 kilos. 

Steve knows he needs to keep up his calorie intake, so has also been doing some research on food to eat to combat weight loss due to cancer, by eating good stuff rather than empty calories.  The "Bristol approach to Healthy Eating" has been helpful in this respect.  You can download the booklet from the Penny Bronn Centre website.   Seeds and nuts to snack on, plus calorie dense foods like oily fish, avocados and coconut milk will be added to the shopping list, as well as the stomach calming medicine!

The booklet also highlights the benefits of physical activity - supporting bone and muscle strength, energy levels and psychological  health, as well as helping maintain a healthy weight - so we will have to figure out an easy way to incorporate 30 minutes of physical exercise into our daily routine. Time to borrow a dog for walks, I wonder? 

Tomorrow is the start of cycle 2, and an early one for us - 8.30 am at the Early Phase Clinical Trails Unit.  More of that in my next post....

Thursday 2 October 2014

AZD0424 clinical trial Cycle 1 Days 1-3

We have finished our hospital visits for this week, the first on the new early phase clinical trial of AZD0424.  

A bit of a marathon on Tuesday, with the full battery of tests to start off, followed by a series of blood samples every few hours for research purposes.  By 8pm when the last sample was due to be taken, Steve's veins had had enough and refused to cooperate. 

In spite of flushing the cannula, no blood would flow so the nurse had to insert a new needle in his other arm to take the sample. As result, we left the hospital even later than anticipated and returned home about 13 hours after we started out...exhausting stuff, sitting doing nothing much of the time!

The following hospital visits have been better - a relatively quick in and out yesterday, although it took two goes to find a vein willing to give blood for yesterday's 24 hour blood sample.  Today, the 48 hour sample was quick and painless, and we were out in time to do a food shop on the way home.

No obvious physical side effects as yet.  Fatigue...but this could be a result of the weekend away and a long day on Tuesday catching up with us.  I have felt tired too.  Neither of us are sleeping well - I think there is inevitably some anxiety about what might happen as a result of the trial...not surprising when you take a leap into the unknown.  Steve says he is noticing every little twinge and feeling, in case it signals the onset of side effects.  

On the bright side, his appetite is good..which is a relief as he has been loosing weight.  We just need a bit of time to settle into a new routine around dose time - nothing to eat or drink (except water) for two hours before taking the capsules and one hour after.  

We will miss meeting up with the meso warriors at the Patient and Carer Day in Leicester this Saturday.  London calls...and an appointment to transport various bits and pieces for our son who is moving accommodation, always assuming Steve feels up to the drive there and back.  Fellow blogger Mavis is going to give everyone a hug from us, aren't you Mavis? !!

Here's a special hug for those who are having it tough at the moment x