Flying in a holding pattern

About this time last year, Steve's meso started growing again after being knocked back by the standard treatment of pemetrexed/carboplatin over the winter of 2012/13.  

The meso carried on growing, albeit slowly, through the VanSel early phase drug trial that Steve took part in between February and April this year.  So it came as no surprise yesterday to find out at Steve's assessment that there has been disease progression.  However, seeing the X-ray from January displayed next to yesterday's X-ray was a reality check; a noticeable increase in pleural thickening and tumour growth at the base of his right lung, wiping out any faint flicker of hope that there might have been a delayed response to the trial drugs.

Although there is another clinical trial currently recruiting in Oxford, it's a dose escalation study and has only recently started, so the clinical trials team know it will be some time before they reach an effective dose.  Dr Ioannis advised that he didn't think it worth putting Steve into this trial so early in the dose escalation as he probably wouldn't benefit.  

However, we understand that there are other things in the pipeline which are possibilities.  To see whether Steve might be eligible, he had bloods taken for testing: C&G, CF7 and BF7 (if we have read the doctor's hand-writing correctly). Does any one know what these tests are for?  I've googled but found nothing - at least nothing relating to blood tests....

There are also options to re-challenge with pemetrexed / carboplatin, which produced a good response last time around, and to explore clinical trials which are recruiting elsewhere.  We told him about the MK-3475 trial that fellow meso warrior Mavis is on at the Royal Marsden, and how promising her scan results were.  He is happy to refer, if Steve wants to see what's on offer at other hospitals.

The doctor has asked for another scan to be arranged in the next couple of weeks to compare the results with the scan taken towards the end of the VanSel drug trial, in early April. This will give an indication of the speed of disease progression, which may help decide the best option to go forward.  

The scan will also show whether the lump on his chest is meso-related or not.  The doctor thinks not, based on the X-ray.  However, the more detailed scan will clarify this. Whatever it is, thankfully it's causing no pain.  In fact, Steve is still feeling good and leading a "normal" life to all intents and purposes - walking, lifting, carrying with no significant problems.

If disease progression is speeding up, Steve may wish to start treatment with pemetrexed and carboplatin sooner rather than later.  If the meso is still relatively slow-growing, Steve may wish to hold off treatment until after Christmas, or whenever a promising trial is open for him.  

We have another appointment with the clinical trials unit in late September.  Steve will also be given an appointment with the consultant oncologist Dr T, to discuss all the options when the scan results are known.  That way he remains on the clinical trials waiting list, but can also have more of the standard chemo if that's considered to be the way forward. 

So....sometime in the next 4-6 weeks, we will have a better idea of the best course of action.  In the meantime, it feels like we are flying in a holding pattern until cleared to land on one treatment option runway or another.  

Whatever happens, we will make the most of the next few weeks! Arrangements are already in place for family gatherings in London and Bristol.  Flights and accommodation are booked for a get-together with our photographer friends in Heidelberg.  The last big push on the garden makeover starts next week, with a contractor doing the really hard work....We can just sit back, watch, and enjoy choosing the plants ready to plant out when it's all finished in a few weeks time!  

With Oxford Open Doors, London Open House, Oxford Thai Festival and St Giles Fair to look forward to in the next few weeks, some socialising and a work-related trip to Guernsey (as well as a scan and more hospital appointments) September looks like it will be another busy month with little time to get too stressed about what happens next. That's the theory anyway...

Mixed feelings

The scan results are in....the bad news is that there has been disease progression since Steve started the VanSel drug trial.  

The radiologist looked at a number of circular lesions in the right lung and compared sizes on the scan taken last week with the pre-trial scan in January. The growth was assessed as 26%, which sounds rather alarming. However, due to its nature, diffuse mesothelioma is notoriously difficult to measure accurately, so there is some margin for error in this assessment.

The good news is that in real terms the total (cumulative) increase in tumour size is only 1.7 cm.  We were told that the rate of growth is extremely low when compared to most mesothelioma cases.  The other good news is that the mesothelioma has not spread below the diaphragm or into Steve's bones, and remains confined to the right lung with no new areas showing up on the scan.  

In fact, the bulk of the cancer is still so small that it's difficult to tell the difference between right and left lung when the back is percussed.  It does not sound dull, which is what happens if the meso grows significantly.

Dr Nick examined Steve's chest and advised that the pain he experienced recently in the rib area is nothing to do with the meso - it's just a strain from coughing (which seems to have improved over the last day or two).

Under more recent clinical trial protocols, a 26% increase in tumour size would be considered "stable" disease.   However, the VanSel study started in 2011.  At that time, it was decided that the drug trial protocol would define any growth greater than 20% as disease progression.  Because Steve's has gone over that threshold, the treatment has to stop.  

Having had a couple of hours to digest the news, this outcome has left us both with mixed feelings: disappointment on the one hand and relief on the other.  

Disappointment that the combination of drugs has not stopped Steve's meso in its tracks and that, for him, its not the magic bullet to cure the disease (although it may work better on someone else).  It's also possible that the benefit of taking the drugs has yet to manifest themselves in Steve's case - there may be a delayed response, or it may have slowed what would otherwise have been more rapid growth. The bottom line is that we don't know.

But now that the decision about continuing the trial has been taken out of our hands, it feels like a weight being lifted off our shoulders.  Steve had said that even had there been a reduction in tumour size, deciding whether or not to carry on with treatment would still have been a tough call. Living with the side effects of the trial drugs, especially daily diarrhoea at unpredictable times, has keep us housebound for the last couple of months...Steve has felt too vulnerable to venture far from a lavatory. It's difficult to imagine enjoying a life like that in the long term, at least not at the moment while he is otherwise asymptomatic.

Steve remains under the care of the Early Phase Clinical Trials Unit for another four weeks and will go back at the end of that time for a post-trial check up, including blood and urine tests, temperature, pulse, blood pressure, weight and ECG. He won't need another scan having had one relatively recently, or another eye test - that was done this afternoon.  

Dr Nick will tell Steve's consultant what's happened, and he will be put back in "the system" and followed up in clinic, as normal.  However, Steve's name will be put on the waiting list for any suitable Phase 1 trials that come up in future. Because he is relatively fit (aside from the mesothelioma) he is considered an ideal candidate.  We were also told that there are other trials coming through in Oxford, so maybe he won't have to wait too long if his condition worsens.

In the meantime, he's looking forward to getting the drugs out of his system and returning to "normal" over the next few weeks.  Its a relief to know that from now on, our lives won't be regulated by dose and fasting times; we can once again enjoy the pleasure of a late breakfast and an evening meal without worrying about finishing food and drink by 9.30 am/pm.  Meals out with family and friends are on the cards again as and when Steve's gut gets back to normal, and we can think about going away for a long weekend or short break, which we have both missed this year.

And now, for the first time in 2014, we have the prospect of not going to hospital for a whole month!  The team on the Early Phase Clinical Trials Units are great, but it will be nice not to have to see them once or twice every week, as we have been going since January when the pre-trial tests started...With blue skies and sunshine, it almost feels like the start of the long school holiday.... 

....and Easter will be extra special this year!   

time to think about options....

Unlike the doctor who kept us waiting an hour and a half this morning, I won't keep you in suspense about the outcome of Steve's assessment this morning.  

The scan taken at the end of October showed some pleural thickening (minor according to radiologist's report).  It also showed a "new lymph node about 1.5 cm in size" to use the doctor's words.  I am kicking myself now that we didn't ask a few more questions about this aspect of the result. However, we were still digesting the news when the registrar moved on to talk about options....

Option 1 is do nothing for the time being, as Steve is largely asymptomatic and enjoying "normal" life; keep under review and take action only when he has problems.

Option 2 is to have another regime of pemetrexed and carboplatin; it resulted in shrinkage before with no lasting ill effects and may have the same positive effect second time around.

Option 3 is to go on another drug trial.  

Oxford has a two part trial open at the moment.  Although Part 2 is aimed at Non-Small Cell Lung Cancer (NSCLC), Part 1 is also open to other types of cancer.  The drug trial is called "VANSEL 1" for short.  It's a Phase 1 dose escalation trial of the oral VEGH/EGRF inhibitor Vandetanib (ZD6474) in combination with the oral MEK inhibitor Selumetinib (AZ6244).  Details of the trial can be found by clicking here

Vandetanib is a type of biological therapy called a tyrosine kinase inhibitor (TK1).  Tyrosine kinases are proteins that sends signals to cells telling them to grow and divide.  TK1 blocks these proteins which can stop cells growing.  

Selumetinib is another type of biological therapy called a MEK inhibitor.  MEK is also a body protein that sends signals to cells to grow and divide.  Blocking MEK may also stop cancer cells growing.  Researchers think that using both drugs together may may be better than having one or the other on their own.  

We asked about the current trials at Barts and Leicester (MESO 2, COMMAND, ADAMS and SKOPOS) but the registrar knew nothing of these.  She made notes and will follow up with the consultant Dr T.

Steve said that he doesn't want to sit back and do nothing. He thinks that if he leaves it until the disease takes off properly, his treatment options will close down or be less effective.  

His gut instinct at the moment is to go with the drug trial option, if he is suitable.  However, that involves a decision as to whether to chose the local Phase 1 trial and be a guinea pig to help establish the most effective combination of dose and frequency, or go on a Phase 2 trial and run the risk of getting a placebo rather than the drug (plus there is the time, cost and energy implications of traveling to London or Leicester).  Decisions, decisions....

We need a bit of time to digest this news, do some more focussed research and consider the best option for Steve, so we have arranged to go back on 9 January, talk it though and make an informed decision.  In the meantime, we will concentrate on having a wonderful Christmas and enjoying life before treatment begins again and takes us out of circulation for a while.  

I wasn't sure whether we would be breaking open the fizz tonight given this news.  However Steve is already one of the lucky one in ten alive three years after diagnosis and in six months time will be one of the 5% still going strong five years post-diagnosis.  Looked at that way, we have a lot to celebrate and he still has options!  I think I will put the bottle in the fridge after all :-) 






  

Assessment day

The elusive pink slip for Steve's X-ray didn't arrive in the post, so we hoped it would be waiting for us at the reception as promised, when we arrived at the hospital this morning for Steve's assessment.  To our delight and relief, there it was, ready and waiting for Steve when he checked in at the day clinic reception on arrival.  

As it was close to the appointment time, I returned to the waiting area in the day clinic while Steve had his X-ray. We usually have to wait a 20-30 minutes, sometimes longer, before being called in from the waiting area to the consultation room.  Today, Steve's name was called right on time - while he was still in Radiology - so we had to wait for the next available slot to see the consultant.  

The last few assessments have been carried out by one of the registrars.  Today, to our surprise and delight, it was Doctor T himself - always relaxed and able to put us at our ease.  He didn't keep us waiting in suspense. He told us that he'd looked at Steve's X-ray and could see no discernible change. On physical examination, the chest sounded good. If you read the blog regularly, you will know that Steve is very fortunate to have no other symptoms usually associated with mesothelioma - no pain, not even the breathlessness that he was aware of a couple of years ago.  

His weight is down a little on this visit, which is easily attributed to being weighed today wearing a T shirt and cut-offs rather than the usual jeans and jacket, and the fact that we've had a bit more physical exercise recently, refurbishing the spare room.

Unlike most hospitals which give meso patients CT scans every three months, up to now, ours has only taken scans as part of a chemo regime to assess response to treatment. The rest of the time, they use X-rays which deliver a lower dose of radiation, and only follow up with a scan if the X-ray shows a noticeable change in the cancer.  

I was therefore a bit concerned when Dr T said he would like a CT scan before Steve's next assessment in December, and queried whether this was because of something he'd noticed on the X-ray. We were reassured by Dr T that there was nothing on the X-ray to cause concern. He just thought it would be about time by then for another scan to compare to the one taken at the end of the second line chemo regime which finished earlier this year. 

We had a short discussion about scans and the fact that being more detailed, they can show up areas of meso activity not visible on the X-ray.  Dr T said that some people prefer not to know this level of detail, especially if they are feeling OK otherwise.  Did Steve want a scan, bearing this in mind?  The answer was yes.  So that's what happens next.  

The appointment will probably come through in the post in 2-3 weeks time.  If we want to know sooner, we can ring radiology in a week or so and enquire about timescale, so we don't have to hang around waiting for the appointment before sorting out our plans for the next three months.

The pink slip of paper requesting a scan will be filled in today, photocopied by his secretary to "prove that the request was made" as he said, then taken to radiology to be processed.  So much for the paperless office!

And so the next three months has opened up for us and we can look forward again.  Time to firm up those "pencilled in" arrangements and make plans!  Lots to look forward to in the coming months to make the most of the time between now and the next appointment on 5 December.  

As Steve said as we walked out of the hospital, even if the forthcoming scan indicates meso activity which justifies further treatment, it's unlikely that chemo would start straight way.  All being well, he will be able to enjoy Christmas 2013 and celebrate with a bottle (or two) of fizz, unlike last Christmas when he was four cycles into a six cycle regime of Alimta and carboplatin and not feeling so great.  

Which reminds me - time to put the fizz in the fridge for tonight's celebration and make the most of the sun on what looks to be the last day of summer here in the UK.  Raise a glass with us this evening!

Celebration of Lights by Talha Tariq

Here's hoping that other meso warriors have good news today and next week.  Fingers crossed for all of you xxx