Happy Christmas

This seems like the perfect time of year to thank all those who have sent Katie and I their kind words and best wishes during the last twelve months and, especially, in the last few weeks. We really appreciate the tremendous friendship and support that we have received from so many people since my diagnosis so thank you all!

 

***

 

One of the downsides to my treatment has been my inability to travel outside the UK. Whilst I'm passionate about the British Isles it is sometimes nice to be able to go somewhere different so it was a major 'bright side' when my oncologist told me he had no objection to Katie and I travelling during my current break in treatment. As we had very little time to plan and as I'm not able to get medical insurance we decided that we'd limit our ambitions and head off for a city break in Europe, so last week we spent three nights in Prague.

 

Prague is a beautiful city with attractive architecture, a rich history and some of the best lager in the world (don't believe a word Carlsberg say, Czech lager is far superior! Try this place if you're ever in the city). Prague also has a very seasonal feel at this time of year. We had a very enjoyable time, it was a real treat!

 

The chance to photograph some of the famous sights was one of the main attractions of the city for me. These shots were taken using a technique known as 'high dynamic range' photography. This involves taking several shots of the same subject with different exposures and then merging these together using software. This is good for capturing detail in scenes in which there are both very bright and very dark areas (click on the images to see larger versions).

 

 

This last picture seems like an ideal cue on which to wish you all a very merry Christmas and a happy new year - "Veselé vánoce a šťastný nový rok" as they say in Prague (no, I can't pronounce that either)!  

 

 

 



Potential next steps

I'm still not sure what my next course of treatment will be. I've started a new daily tablet for my high blood pressure, spironolactone. The hope is that this drug will help reduce my blood pressure to a level at which it might be safe for me to use pazopanib. I'm also waiting to hear back from my oncologist who is seeking a view from my cardiologist on the suitability of pazopanib given my existing heart problems.

 

If pazopanib is deemed unsuitable then there are various other options to be considered.

 

My oncologist has consulted with a colleague of his at the Royal Marsden hospital in London. The doctor from the Marsden has recommended dacarbazine. Dacarbazine has been used to treat sarcoma for quite a number of years so I expected that there would be a good a number of phase II and III trial reports available on the use of this drug in LMS, it seems I was wrong however. So far I've only been able to find results from a single trial of this drug. In that trial only around 25% of patients treated got benefit (shrinkage of their tumours or disease stability). The trial doesn't indicate how many of these patients had LMS rather than other forms of sarcoma. I've also been looking into whether this drug might be more or less likely to work for me because of the rare genetic mutation I carry (Li-Fraumeni Syndrome). From what I've read so far it seems like the drug may not function correctly in people with this genetic problem. So far then I'm really not convinced by this option.

 

Another potential treatment option is sorafenib. Sorafenib is a drug that works in a similar way to pazopanib but which may be easier on my heart and blood pressure. The problem with sorafenib is that there is very little research on its use in LMS. There are a couple of phase II trials but these involved low numbers of LMS patients though they both showed that sorafenib provided disease stability in around 50% of the LMS patients treated.

 

The final option that I'm aware of at this point would be to try the very first chemotherapy regime I had again. This was a combination of gemcitabine and docetaxal. It worked for me so it is possible that it might work again. It did have some challenging side effects though, most notably lots of fluid retention in my feet, arms and legs and muscle weakness in my legs and arms too. These side effects limited my mobility quite a lot though they weren't overly uncomfortable as long as I spent most of my time on the sofa!

 

I'm seeing my oncologist on the 2nd January and we should be able to make a decision on the way forward then.

 

In the meantime we're all set for Christmas. I'm really looking forward to spending the festive season without any chemo induced side effects!

 

***

 

A number of people have mentioned that they enjoyed the two photo's that I recently posted from my afternoon spent as a sports photographer at the Bath vs. Exeter LV Cup match. Here are a couple of my favourites from that match.

 

 



The first of these shots shows Bath hooker Ross Batty flattening an Exeter player who had the nerve to try  and tackle him, the second shows Bath's fly-half, George  Ford, kicking for goal.

 

Looking hard for the 'bright side'

I had my latest consultation with my oncologist today. It was a meeting Katie and I were worried about as we were due to get the results of the CT scan that I had two weeks ago and we had some reasons to think that the scan might show that my cancer is progressing.

 

Around two months ago I realised that a small bump on the side of head was not a spot, as I'd thought, but something more concerning. At just about the same time I found a very small lump in my left arm pit, it felt about the size and shape of a grain of rice. My oncologist examined these at my last meeting with him four weeks ago. He felt that they could potentially be subcutaneous tumours. The appearance of tumours like these would indicate that my chemotherapy was no longer working. My oncologist proposed that we waited until we had the scan results before deciding on a course of action.

 

We have those results now and they show that the tumours in my abdomen have grown. They are described by the radiologist as 'large' although no measurements are given.  

 

Three lung metasteses are also mentioned in the radiology report. According to the radiologist two of these were visible on earlier scans and the third is new. The two existing lung tumours have grown although they are all relatively small at present, the largest being around 5mm across. On the brighter side the scan also showed that my liver tumours are stable, at least for now.

 

These findings confirm that some of the cells in my tumours have found a way to become resistant to the Trabectedin treatment I've been receiving. We agreed with my oncologist that we should discontinue Trabectedin and move on to another drug but that we should wait until after Christmas before doing this so that I can have a  few weeks break.

 

Prior to today we had a fairly clear idea that the next treatment I would have would be Pazopanib, however the last few weeks I've been suffering from high blood pressure and I also have some problems with my heart function following the heart failure issues earlier this year. This may mean that it is too risky for me to take Pazopanib as its side effects include high blood pressure and irregular heart beat. My oncologist is going to check with my cardiologist before making a decision. If Pazopanib is not an option there are some other ideas we can look at.

 

So it's not been the best of days, however looking hard for the 'bright side' I've come up with the following:

• I can enjoy a few glasses of wine and the odd beer or two over Christmas;
• the chemo that was schedule for Tuesday next week has been cancelled so I won't have the usual side effects to enjoy for the week or so after that;
• I've had my PICC line removed, this is great as it had continued to cause skin irritation from time to time;
• I've had 575 days of stable disease thanks to the Trabectedin. Whilst it would have been nice to have had even longer this is more than I could realistically  have hoped for when I started my first cycle back in May 2012. 

The situation I find myself in is far from where I'd like to be, I am however determined to make the best of it that I can.

 

***

 

And now to show that my sense of humour is still intact...most people who have been treated for cancer will have experienced problems with their digestive system. For me the two biggest issues I've had are wind and constipation. On the former I will just say that it is amazing what the human body is capable of and leave the rest to your imagination! Where constipation is concerned, laxatives are the way to go (sorry about the pun - I can hear the groans already)! Yesterday I saw the following poster in a pub:

 

 

They certainly knew how to name products in those days, 'Bombs-Away' is so much more descriptive than 'Laxido' or 'Senna'!

 

 

 

 



Backing a long shot

Together with many other cancer patients what I want most is a research breakthrough that will provide a new and much more effective way of treating my illness. Since being diagnosed in 2011 I've been following various research initiatives, one of which has developed into a recognised new treatment for Leiomyosarcoma. Unfortunately the effectiveness of this new treatment is limited and, whilst it's certainly a useful addition to the existing options, it doesn't fundamentally change the balance of power between the disease and the patient.  It does demonstrate however that new treatments can emerge in a timeframe of help to me.

 

There is one research programme that may offer the possibility of something better. Researchers at Stanford University are trying to unlock the potential of the human immune system to destroy cancer cells. They have identified that many cancer cells have, on their surface, a protein that acts as a "don't eat me" signal to macrophage cells. Macrophages are cells of the immune system, their job is to identify aberrant cells within the body and destroy them. Macrophages would normally be expected to target cancer cells but the "don't eat me" signal prevents them from doing so protecting the cancer and allowing it to grow.

 

This mechanism reminds me of being on safari in Zambia. If I was to stand ten yards away from a lion in South Luangwa national park I'm pretty certain the lion would attack me, however if I sit at the same distance in a totally open jeep the lion doesn't see me as a target. The jeep is a powerful "don't eat me" signal to the lion - so powerful that thousands of safari goers literally trust their lives to it every year.

 

The Stanford researchers have found a way of blocking the cancer cell's "don't eat me" signal so that the macrophages see the cancer cells for what they are. When a mouse, into which human tumour cells have been transplanted, is treated with an antibody that blocks the signal the mouse's immune system destroys the cancer cells. One of the things that is really significant about this research is that this "don't eat me" signal is found in many different types of cancer. This leads to hope that this treatment will be effective against many forms of the disease. LMS has been identified as one of the cancers that this treatment may be effective against.

 

My explanation here is an over simplification of what is really going on, but it does give a flavour of how this research hopes to deliver a significant blow against many cancers. The researchers are planning to launch human trials either late this year or early next. I know of no more exciting development in LMS treatment research than this. The odds of this being an effective treatment in humans are still very small but at least we have a horse in the race.

 

You can read more about this research here.

 

***

 

As I mentioned lions above these seem like appropriate pictures with which to end this post. These fine looking animals are residents of Chester Zoo. No "don't eat me" signal was required to take these pictures - the wire fence was enough!

 

 

 

 

An afternoon as a sports photographer

I had a really enjoyable time this afternoon courtesy of Bath Rugby. A couple of months ago Katie contacted them and asked if it would be possible for me to have a press photography pass for one of their matches. The club were happy to help and so today I got to pretend to be a professional sports photographer at the LV Cup game between Bath and their west country rivals Exeter Chiefs.

 

Sports photography isn't as easy as it may look. Within a few seconds of the match starting Bath scored a try pretty much directly in front of where I was sitting. The attacking move was so quick and the try so close that I completely failed to get any shots of Bath crossing the line! Bath then went and gave a repeat performance straight from the restart, I did a little better that time around but still wasn't fast enough to capture the peak action. Sitting low down just a couple of yards behind pitch provided a pretty spectacular position from which to view the game. The speed and power of the players is really impressive up that close.

 

I took eight hundred photo's this afternoon so I haven't had chance to sort through them yet, however here are a couple from those first two tries. Bath's Carl Ferns makes the break that leads to the first score:

 

 

 

Winger Mat Banahan runs through a tackle on his way to setting up the second try:

 

 

 

Many thanks to Bath Rugby for making this possible and to Katie for organising it for me.     

 

 

The Phoney War

My current chemotherapy cycle has been going very well so far. I had just a week or so of relatively mild side effects. The fluid retention has been a lot better these last few cycles which is a big relief as putting on large amounts of weight in just a few days isn't fun.

 

***

Apart from one break of a few months, I've now been on chemotherapy since April 2011. In the absence of any significant symptoms, my experience of my illness is defined by the repeating cycle of three months of treatment followed by a scan. Even with the relatively mild side effects I've been experiencing there is something psychologically difficult knowing that I can only get off this particular treadmill when there aren't any good treatment options left for me. 

 

It occurred to me that my situation has some parallels to what it may have been like during the 'Phoney War' period that occurred in the months between the German invasion of Poland in September 1939 and their attack on France in May 1940. Britain and France were both at war with Germany but there was very little combat involving these three nations. People knew that the storm was approaching but had no idea when it would arrive. I imagine that some people reacted to the waiting and uncertainty by wishing that the real war would start so they could face whatever fate had in store for them and, hopefully, then get on with their lives.

 

In the context of my cancer I sometimes experience a strong sense of wanting to ‘get on with it’, that is of wanting to move past the current phase of my illness to face what is coming next. I think that this feeling comes from a wish to get something that is both scary and daunting out of the way as soon as possible. In many situations this kind of emotion would be reasonable but in my situation it really doesn’t make sense. Perhaps my emotional self is still to fully accept the reality of my position. 

 

For now I feel that the best way to try and deal with these emotions is to avoid looking too far into the future. Thinking about an on-going repetition of chemo punctuated by the anxiety of waiting for scan results or, worse still, coming to the end of my viable treatment options doesn’t do me any good. By focusing only on the short term future I hope to avoid having my enjoyment of today spoilt by the knowledge of what lies ahead.



***

Here's a photo from Westonbirt Arboretum taken last week, I like the colours in this one:

 

 

Awaiting autumn colours

I had my latest chemotherapy treatment on Tuesday and Wednesday this week. The treatment went fine and although I'm now experiencing the usual side effects that I get for the days immediately after receiving the drug I'm feeling ok. I will be due for my next treatment in four weeks time.

 

***

 

I went out last week and took this photograph looking over Bath city centre from Widcombe Hill, as you can see there isn't much in the way of autumnal colour in the trees yet.

 

This view of the city shows the Abbey and the Empire Hotel with the Royal Crescent in the background. The colours should be very good in a week or two, hopefully the sun will put in a appearance so I can get some nice shots.

 

Cancer drugs fund

The government recently announced plans to extend the availability of the cancer drugs fund until March 2016. The fund was introduced in 2011 to allow oncologists and cancer patients to access drugs that had not been approved for general use in the NHS and was due to end in April 2014.

 

Personally I'm very pleased by this news. Patients with rare cancers like Leiomyosarcoma (LMS) generally have very few treatment options. The National Institute for Health and Care Excellence (NICE) is responsible for approving new drugs for use in the NHS, however decisions are sometimes taken not to submit a drug to the approvals process because the number of potential users is low and the cost of the process high. Such decisions can leave those with rare cancers unable to access drugs from which they could benefit. One such drug is Pazopanib, This drug is beneficial to some patients with LMS, however NICE decided not to take the drug through the approvals process. This is where the cancer drugs fund comes in, LMS patients can get access to Pazopanib through the scheme. Pazopanib is likely to be my next treatment when I finally have to move on from Trabectedin so it is great to know that funding for it should be available.

 

Like a lot of health policy initiatives the cancer drugs fund is not without issues. The NICE drug approval process gives NICE considerable power to negotiate a good price for the drug with the drug manufacturer. Some feel that the cancer drugs fund weakens this negotiating power as drug companies know that patients will be able to access their drugs through the fund without NICE approval. This may lead to higher costs for drugs. When NICE approved Trabectedin, the drug I'm currently being treated with, they did so on the basis that the drug manufacturer would only charge them for a maximum of 5 treatment cycles per patient. If the manufacturer had not made this offer NICE may well have rejected the drug. I've now had 17 cycles of Trabectedin, 12 of which have been funded by the drug company. Each cycle costs around £3,500 so the NHS has saved over £40,000 through the deal NICE negotiated. Trabectedin was approved before the drugs fund came into existence, it is interesting to speculate if the drug company would have accepted the same deal if the cancer drugs fund had been in place back then.

 

Despite this issue most stakeholders seem to support the extension of the fund. My oncologist says that he and his colleagues like the flexibility that the fund gives them in selecting treatments, cancer patients are pleased to know they can get the drugs they need and cancer charities as supportive too. The fund costs around £200 million a year to run, money well spent in my opinion.

 

I will be going ahead with my next cycle of chemotherapy on Tuesday (blood tests permitting) and will have my next scan at the end of November, so for now I don't need to access the fund.

 

***

 

I've been out and about in Bath with my camera. Bath Abbey is one of the most striking buildings in the city and contains some beautiful stained glass windows, the one shown below is my personal favourite. In 973 Edgar, the first king of all England was crowned in Bath. This 19th century window commemorates Edgar's coronation. The man crowning Edgar is his Archbishop of Canterbury, Dunstan (later St. Dunstan).   

 

 

  

More fun with my PICC line

Ahead of last weeks chemotherapy I had to have a new PICC line inserted into my arm. Normally a PICC line is held in place with a dressing could a 'stat lock', but the skin on my arms has become sensitive to sticky dressings of any sort and I get an itchy, blistery reaction to them now. The previous PICC line, the one that seems to have caused my recent infection, had been stitched directly into my arm to hold it in place. The problem with stitching the PICC line in however is that it makes it difficult to clean the skin around the area properly, something that might increase the risk of another infection. This time around I decided that I would revert to using a 'stat lock' but that I'd have a layer of 'liquid skin' applied to my arm first so that the adhesive of the dressing wouldn't be in direct contact with my arm. I went ahead and had the PICC line fitted in this way a week and a half ago, unfortunately by Wednesday night this week it was clear that my skin was still unhappy with the adhesive and yesterday I had to go back to the hospital and have the PICC line stitched in place. Not an ideal situation but it'll have to do for now!

 

My most recent treatment cycle is going well and the side effects have been quite manageable, a little extra fatigue being the most persistent of them but that has decreased somewhat in the last couple of days. 

 

This is a great time of year for fungi, I like this shot that I got last week:

 

 

   

 

 

Stephen Hawking & assisted dying

Stephen Hawking, the well-known theoretical physicist who has suffered from motor neurone disease for much of his life, has been in the news this week after speaking out in favour of assisted dying. Assisted dying is where a terminally ill person is helped to end their life by another person, usually a doctor or sometimes a relative. Hawking is quoted by the Daily Telegraph as saying:

 

"Those who have a terminal illness and are in great pain should have the right to choose to end their own life and those that help them should be free from prosecution".

 

Assisted dying is illegal in the UK though over recent years there has been increasing debate as to whether the law should be changed, this increased interest has been the result of some high profile cases in which those who wish to utilise assisted dying have sought legal guarantees that people that help them to die would not be prosecuted.

 

I am strongly in favour of a change in the law to permit assisted dying. There are undoubtedly many terminally ill people who would benefit greatly from the reassurance that would be provided by knowing that they could take control of the timing and manner of their own death and that anyone who assisted them would not be prosecuted. I have thought a lot about this since my diagnosis in 2011, to me the process of dying is more frightening than the idea of death itself.

 

The main argument against assisted dying seems to be the very valid concerns that vulnerable people could be coerced into consenting to have their lives ended or that some people might even use assisted dying as a cover for murder. These concerns could, I believe, be addressed through the implementation of a comprehensive system of safeguards. These could include restricting the right to assisted dying to a subset of terminally ill people chosen using criteria that provide the highest level of confidence that the wishes they express are really their own. Any law would also have to guarantee the right of medical professionals to decline to be involved in assisted dying if it is not aligned with their personal beliefs or ethics.

 

Another argument that is put forward by some is one based on religious grounds. I respect the right of others to hold religious beliefs and to use these to shape the way they live. However a change to the law would not force anyone to utilise assisted dying, a person with religious beliefs would be under no pressure to opt to end their life this way if they were to find themselves suffering from a terminal illness. They would, therefore, be completely free to follow their beliefs. As an atheist, I object strongly to other people trying to impose their religious beliefs on me, I respect their right to choose but ask them to respect my right too.

 

Another argument I have seen advanced against assisted dying is that palliative care has now advanced to the point where nobody needs to endure a painful and distressing end. I spoke to a nurse from our local hospice about this. She works day in and day out with people who are dying. She told me that even with the very best of care she could not say that people always had deaths free from pain and suffering. There could, she said, be no guarantees.

 

Assisted dying is legal in a number of countries around the world. According to the campaign group 'Dignity in Dying', the evidence from these countries shows that assisted dying laws with appropriate safeguards effectively address the concerns noted above.

 

If you are interested in supporting the 'Dignity in Dying' campaign for a change in the UK law you can find their website here.

 

 

  

 

 

 

 

Autumn Hare

I had a routine oncology appointment yesterday and finally got the radiologist's report from the CT scan that I had back on 16th August. I'd already been told verbally that it showed that the tumours are stable but I always like to get a copy of the report just to be sure there are no surprises lurking there. This time around the report confirms what I was told: the radiologists view is that the tumours have not changed in size or appearance since my previous scan back in May. This is really good news.

 

I will now have another three cycles of chemotherapy prior to my next scan, that should take me through into December. I will have my next treatment on Wednesday next week after having another PICC line inserted on Tuesday morning.

 

By way of celebrating the scan result Katie and I decided to go out to dinner at one of my favourite restaurants - Hudson's Bar and Grill in Bath. It specialises in steak, not the most healthy food for the body but certainly good for the spirits! By way of a double indulgence we also called in at the Salamander for a pint of 'Autumn Hare'. This is the seasonal autumn beer of Bath Ales, I think it's their nicest brew and I always look forward to it becoming available at this time of year. I only drink one or two beers a month so I'm very fussy about finding a pint that I really like!

 

With hospital stays and unfavourable weather I haven't been out with my camera these last few weeks. Here's a photo I like that I took a few years back showing the Empire Hotel and Pulteney Bridge in Bath at night. The bridge was designed by Robert Adam and completed in 1774.

 

 

 

 

 

 

 

 

Home again

I'm now back home again after being released from hospital late this afternoon. I didn't see a doctor until around 5pm today so I had no idea until then that they were going to let me out. Since I was admitted on Tuesday night the nurses have been busy sticking needles in me as you can see from the fine assortment of dressings I'm modelling in the photo below:

They weren't doing this for fun of course and the various tests I had enabled the doctors to confirm that the latest infection was a reoccurrence of the one from last week, it is likely that my PICC line harboured some of the bacteria allowing the infection to flare up again once I came of the antibiotics. I've now had my PICC line removed to make sure I don't have the same problem this coming week. I'm on antibiotic pills for the next six days and the hospital have also told me that I need to call them immediately if I develop another temperature.

 

Whilst I was in hospital I finally received the result of the CT scan that I had back on the 16th August. I haven't seen the radiologist's report yet but I've been told that the scan shows that my cancer is stable - a positive result. The plan now will be for me to have another three cycles of Trabectedin. I was scheduled to have chemo this week but the doctors don't want to go ahead until they are quite sure there is no infection left, they are now scheduling my next treatment for the week after next.

 

Trabectedin can't be administered through a regular cannula so I'll have to have another PICC line inserted prior to my next treatment. I'm hoping the nurse who does this manages to find some better music this time around, she has very suspect taste if my last three PICC line procedures are anything to go by!

 

During my time in hospital I've had plenty of opportunity to catch up on my reading. I’ve just finished ‘The Norman Conquest’ by Marc Morris, a well written and informative book about a period in history about which I knew little. Well worth a read for anyone who wants to know whether King Harold really got an arrow in the eye at Hastings or the truth behind the story of King Cnut and his attempt to turn back the incoming tide.

Deja Vu

Katie here again. Unfortunately Paul is back in hospital with an infection. He felt unwell this afternoon and came home from work and took his temperature which was high. So, back off to the Bristol Royal Infirmary. They intend to remove his PICC line which can be a source of infection and then see whether his temperature drops. His neutrophil count has improved from last week which means his immune system is in better shape to deal with the infection. He may need intravenous antibiotics again but not certain at this point. Will post again when I have more news.

Home!

This is a very short post to say that I'm now back at home having been discharged earlier than expected from the hospital.

 

I finished the course of antibiotics this morning and as both my temperature and the blood marker for the infection had returned to normal my consultant decided I could go home late this afternoon. I'm feeling fine.

 

It's very nice to be out of the hospital and I'm looking forward to the weekend. Thanks to all those who sent Katie and I their best wishes this last week!

 

The plan now is that I will have my next cycle of chemotherapy next week though we're not sure which day that will be.

 

There's a lot of building work going on at the hospital so there are plenty of cranes around...

Feeling positive

Hi, Katie here again. Paul's temperature has dropped in the last 24 hours and he's had no more shivering episodes (phew). The microbiologists have confirmed that he is on the right antibiotics for the bug they grew from his blood and that he needs to be on these for five days. This means he finishes the drugs on Friday lunchtime. The doctors then want to monitor his temperature for the next 24 hours to check that everything is looking good. So, all going well, we hope Paul will be out of hospital on Saturday afternoon.

Update on Paul

Hi, Katie here. Paul felt unwell yesterday and as he had a temperature we headed into the hospital to get him checked out. The result is that he has an infection and is now on two types of intravenous antibiotics. He'll be in hospital until the doctors are happy that the infection has gone. Hopefully just a few days. Apart from getting severe shivers now and then (called rigor and quite alarming), which is due to the infection, he is not feeling too bad. Keeping our fingers crossed that this clears up ASAP!

Here's Paul hooked up to his antibiotics!

Delayed scan result

I was expecting to get the result of my latest scan at my oncology appointment tomorrow, however the hospital decided to move my appointment to next Thursday even though I'd asked them not to. They made this change as part of scheduling my next chemotherapy appointment so I understand how it happened but it is still frustrating. I've asked that the oncologist give me a call to tell me the results so that I don't have to wait an additional week. It's not ideal as I'd much rather get the news face to face.

 

***

 

Regular readers of my blog will know that I've got a rare genetic mutation that results in a massive increase in the risk of developing certain cancers. People carrying this mutation have Li-Fraumeni Syndrome (LFS). This mutation is almost certainly the primary reason why I have developed LMS at a relatively young age.

 

The mutation is to a gene, TP53, which is responsible for a critical mechanism inside of cells that causes cells that become damaged to self destruct. Without a functioning TP53 gene damaged cells survive and often go on to become cancerous - at least that is the accepted theory as to why people with this mutation have such a high risk of developing cancer. Very recently however a new theory has been put forward by Pan Pantziarka. Pan's theory offers an explanation as to why people with LFS are at increased risk of some specific cancers (including LMS, the cancer I have) but do not seem to be at increased risk of others. More importantly, and if correct, Pan's theory holds out the hope that there may be ways in which the risk of people with LFS developing cancer can be greatly reduced. Potentially some drugs might be able to significantly reduce the risk level. This would represent a huge step forward for those diagnosed as having LFS.

 

Pan's theory is currently untested, however he is to be congratulated on having come up with new and potentially highly beneficial ideas relating to this condition. I hope he gets the support needed now for his theory to be investigated further. For those interested in the detail two papers are available, one for the lay reader here and one for those wanting a more in-depth scientific explanation here.  

 

***

 

A few weeks ago Katie and I visited Gigrin Farm in Wales. This is a tremendous place to see and photograph red kites. The farmer feeds the kites every afternoon, sometimes the easy meal attracts well over three hundred of these magnificent and once endangered birds.

 



Sixteenth cycle of Trabectedin underway

Following a week long delay I was able to proceed today with my sixteenth cycle of Trabectedin, this is excellent news.

 

Last week my neutrophil count was 1.39 (billion neutrophils/litre of blood) whilst this week it was 2.4, it needs to be over 1.5 before it is deemed safe to receive the chemotherapy. According to the Cancer Research UK website, the normal range for neutrophils is between 2 and 7.5 so even today, five weeks after my last treatment, my count was at the bottom of the normal range. This is my twenty-fifth cycle of chemotherapy in the last twenty-eight months so I guess it's to be expected that my bone marrow is a little tired.

 

***

 

When I'm not photographing wildlife I also enjoy photographing gardens. I like to return to the same gardens time and again as the changing seasons, growing plants and different light make every visit unique. Here are a couple of shots I like from this summer, the first from our own garden (a flawless rose grown by Katie) and the second from The Courts Garden in Holt, Wiltshire:

 

 

 

 

Red foxes and silver linings

I've been lucky enough to have some great opportunities to take wildlife photos this summer. In the UK it is always very difficult to photograph wild mammals, on the whole they do a great job of avoiding people. Until just a few weeks ago I'd never managed to photograph wild foxes but then I got the opportunity to spend an afternoon in a hide in Ivor near Slough. It was like a sauna in the hide but the discomfort was worth it. Here are a couple of the shots that I took:

These cute little characters are this year's cubs; for around ninety minutes or so they repeatedly visited the area in front of the hide. It was terrific fun watching and photographing them.

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I was due to start my sixteenth treatment cycle with Trabectedin on Tuesday however my white blood cells had other ideas and my blood count was slightly too low to enable me to go ahead. This is disappointing given that I'm on a reduced dose of the chemotherapy and that I'm only having the drug once every four weeks rather than once every three. This means that I'm receiving significantly less of the drug than the recommended treatment protocol specifies. I will try again on Tuesday next week.

 

I will have my next scan on August 16th. The result is going to be pretty critical as we need to make a decision on whether the Trabectedin is still delivering enough benefit for me to continue with it. The other option that Katie and I have discussed with my oncologist is to switch treatment to Pazopanib but we don't want to make that decision unless we're absolutely sure that the tumours have developed resistance to the current treatment. It will be an anxious wait between having the scan and getting the results a week or two later.

 

On the bright side the delay to my treatment means that I will be feeling well enough this weekend to attend a party that some friends of ours are having to celebrate their recent wedding. I really didn't think we'd be able to go and I'm very pleased that we can.

 

More research on Omega-3

My last post commented on the confusing nature of research into the impact of omega-3 fatty acids on the efficacy of chemotherapy treatment. This morning BBC radio news reported the results of research into these substances and prostate cancer; the findings claim to show that men with higher levels of omega-3 fatty acids in their blood are at significantly greater risk of developing aggressive forms of this disease. This raises further questions in my mind about the role omega-3 fatty acids may play in both the initiation and progression of tumours.

 

Whilst I've been writing about omega-3 fatty acids similar uncertainties exist around the potential benefit or harm caused by many other substances. In the absence of clear evidence to the contrary I will stick with a healthy, balanced diet avoiding supplements (unless instructed otherwise by my oncologist).

 

In discussing the issues around diet related research I'm not criticising cancer research in general; I'm convinced that research into the disease is the best tool we have for improving patient outcomes. I read a really positive story on the Cancer Research UK website today which claims that half a million lives have been saved in the UK in the last thirty years as a result of cancer research. I'm always a little cautious about taking statistics at face value, but in this case I think that the overall message is more important than the detailed figures. Let's hope this trend continues in coming years!

 

 

Diet and cancer, an update

One aspect of my treatment that has surprised me has been the lack of any detailed advice from my doctors regarding what I should or should not be eating. The only advice I've had is that I should eat a balanced diet. This seems a little odd considering the significant volume of information in the press and on the radio, TV and internet related to how one food or another might be good or bad for people with cancer or for those on chemotherapy.

Trying to make sense of the information in the media is not straightforward. For example, back in 2011 a Dutch team from the University Medical Centre in Utrecht published a paper that suggested that some types of fish oil could inhibit the function of some chemotherapy agents. It was reported that the specific oils involved can be found in fish oil supplements containing omega-3 and omega-6 fatty acids. The leader of the research group, Professor Emile Voest, was quoted by the Daily Telegraph saying "These substances can be found in some types of fish oil. Whilst waiting for the results of further research, we currently recommend that these products should not be used whilst people are undergoing chemotherapy".

 

Since reading about this research I've tried to limit my intake of oily fish during the week when I receive my chemotherapy, however I recently read an article that highlights new research that shows that specific fish oils can boost the effectiveness of some chemotherapy agents.

 

This research is good news, however I think it also illustrates the real difficulties facing cancer patients when it comes to making decisions about diet. Most scientific research papers are difficult to understand even for the well informed so it can be difficult to know what to conclude from them. This uncertainty can be increased when other research appears to reach a contradictory conclusion. 

 

Given these difficulties and in the absence of specific advice from my doctors, I prefer to focus on eating a healthy diet containing a wide range of fruit and vegetables. I don't take any dietary supplements as it is difficult to work out which might be beneficial and which harmful or simply neutral. I'm sure that in the future there will be much more detailed dietary advice provided to cancer patients taking into account the specifics of both their disease and their treatment, however I don't see this happening for some years to come.

 

For those wanting more information on the research mentioned above the abstracts of the reports are available at the links below:

 

"Mesenchymal stem cells induce resistance to chemotherapy through the release of platinum-induced fatty acids"  

 

"Selective sensitization of tumors to chemotherapy by marine-derived lipids: a review"

 

 ***

I've been taking advantage of the good weather to photograph some of the wildlife in our garden. This is an aptly named 'Beautiful Demoiselle', we also get large red damselflies but they are not as handsome as this character: 

 

Oncology consultation

Katie and I recently spent a few days in Yorkshire. There were some great photographic opportunities during our trip thanks to both the weather and the local birds being in obliging mood. One of the highlights was a visit to the RSPB reserve at Bempton Cliffs. The cliffs would be extremely impressive even if they were not the summer home and breeding ground for around 200,000 sea birds. For me the gannets were the stars of show:

 

I'm due to have my next round of chemotherapy on Wednesday and saw my oncologist this week for a routine consultation. Last cycle I was prescribed a lower dose of the chemotherapy drug because my white blood cell count hadn't recovered from the previous treatment. My oncologist told me that it is quite common for people who have had lots of chemotherapy to develop 'tired' bone marrow so we've agreed that I should have the lower dose from now on. This means that I should continue to experience the reduced level of side effects that I've had this cycle though it also means the tumours will be exposed to a lower dose of the drug.

In my last post I wrote that I had some concerns regarding the results of my most recent CT scan. The radiology reports for my last two scans (May and February) stated that there has been some minimal growth in the tumours and I wanted to understand how much growth this meant. Katie and I discussed this with my oncologist and we were able to look at the scan from May and compare it, side by side, with a scan from November. It wasn't possible for us to see any clear changes in tumour size because the scans are very difficult to interpret. The tumours in my liver don't show up at all clearly, they appear very diffuse and, in the main, are not clearly differentiated from normal tissue. The tumour in my abdomen is more obvious but it is very difficult to compare the size as the way my abdominal organs sit next to the tumour means that they distort its shape in different ways on the two scans.

My oncologist advised that because of the difficulties in interpreting CT scans he would not conclude that the cancer has stopped responding to the current drug unless there is a really clear increase in tumour size. He is still positive about the current treatment. We have agreed that I will have two more rounds of the current chemo and we'll then see what the next scan shows. I'm satisfied with the discussion we had and with the approach we've agreed.

To end this post here's another one of the gannets from Bempton Cliffs, if you're in the York area during the late spring or summer I strongly recommend a visit, it really is quite a spectacle - even for those who are not normally bird watchers!

 

 

Scan result

I keep forgetting that I should never try and predict anything where my cancer or its treatment is concerned. Katie and I had two surprises at our meeting with my oncologist yesterday. Firstly, the radiology report from the scan I had on Wednesday was available and, secondly, the result was not quite what we had expected. The scan showed 'minimal growth' in both my liver and abdominal tumours compared to the previous scan. This is not as good a result as disease stability but is better than there being more marked growth in the tumours.

 

My oncologist views this as a positive. He recommended that I have three further cycles of Trabectedin before having a further scan in three months. Having had twenty four hours to think about this I'm concerned that three months is too long to wait before checking on how the tumours are responding. At my next appointment with the oncologist I will raise this concern and see if I can have a scan in two months time.

 

I also want to understand more about what is meant by 'minimal growth'. I plan to ask to see a comparison between this most recent scan and the one I had around six months ago. I'm hoping this will provide some reassurance that the tumours are growing very slowly. In the meantime I will be going ahead with my next round of treatment on Tuesday/Wednesday this coming week.

 

There were a couple of unequivocally good points from this scan. First, the small lung tumours that I had are no longer visible. This doesn't mean that they've completely gone, but it does indicate that they have shrunk to a point at which they are no longer resolvable by the CT scanner. Also, my last scan showed that I had a lot of fluid retention around my heart that was causing a degree of heart failure. This recent scan showed that this had cleared up quite considerably - something that is very much aligned both with how I've been feeling physically and with the changes in my weight during the last two cycles. 

 

Here are a couple more shots from Scotland, a white tailed eagle and the Eilean Musdile lighthouse.

 

    

 

Waiting for the results of my latest scan

The last three weeks have been very enjoyable. Katie and I spent ten days up in Scotland and we had a great time. The weather was surprisingly cooperative and we saw some great wildlife and some wonderful scenery. The side effects from my last treatment were milder than they have been on any of the previous twelve cycles of Trabectedin so I've been feeling pretty good.

 

Yesterday I had a CT scan and this afternoon I have an appointment with my oncologist. It is highly unlikely that the radiologist's report on the scan will be available so soon however the oncologist will be able to take a look at the images and see if he can determine if the cancer is stable or if the tumours have started growing again. Past experience has taught us that unless the scan shows a very clear change in the tumours we can't take the oncologist's interpretation as anything other than an indication - we've had a previous instance when the radiology report came to a different conclusion from the one the oncologist had reached.

 

As usual the scan results are absolutely crucial. If the cancer is stable my intention is to go ahead with three more cycles of Trabectedin. If the cancer is growing we'll have discuss next steps with the oncologist. 

 

Waiting to get the results of a scan always makes for a tense and stressful few days. Sitting in the waiting room ahead of seeing the doctor is always the most difficult time in my view, I find in near impossible to think about other things whilst waiting to be called in. The clinic is often running up to an hour late so that also adds to the tension.  

 

I'll post a further update on the situation tomorrow or over the weekend, in the meantime here are a couple of images from Scotland. The first is a dipper and the second is a rainbow in a glen.