Bad pharma?

I've just finished reading Ben Goldacre's most recent book, 'Bad Pharma'. For those who are not familiar with Goldacre, he's a doctor and a journalist/writer on medicine and science. 'Bad Pharma' is subtitled 'How drug companies mislead doctors and harm patients' and presents a detailed list of issues to justify this statement.

 

The books main allegations surround the conduct of clinical trials. Goldacre makes a number of concerning points about trials funded by drug companies, backing up his statements with references to research findings:

• drug companies don't systematically publish the results of all trials that are conducted. Trials that produce negative results are significantly less likely to be published than those that find positive results;
• drug companies don't always stick to the initial trial definition. For instance, in some cases they change the duration of the trial so that it finishes earlier than planned -usually at a point when the trial results appear favourable in terms of the performance of the drug being tested;
• drug companies sometimes change the criteria that is to be used to judge the successful outcome of a trial after the trial has started, typically the newly selected criteria will present a more favourable outcome than the originally selected one;
• drug companies sometimes run trials that focus not on end points that really matter to patients but on proxy measures that may or may not really correlate to those 'real' end points (e.g. such as judging the success of a trial of a statin drug by looking at how it lowers blood cholesterol rather than by looking at how many heart attacks it prevents).

These problems with the conduct of trials mean that it is virtually impossible for doctors to judge whether one drug is better than another and this has a direct impact on patients. Goldacre goes so far as to say that the lack of reliable and comprehensive trial data results in preventable deaths.

 

In addition to the concerns on the conduct of trials, the chapter on the way in which pharmaceutical companies market their products is also very disturbing. Goldacre states that pharmaceutical companies spend twice as much money on marketing as they do on research and development. He describes how there is a great deal of research that shows that this marketing effort has a real impact on the prescribing patterns of doctors and other medical professionals - even though most doctors are confident when asked that their own decisions on prescribing are not changed by exposure to this marketing.

 

I found 'Bad Pharma' to be a very interesting and concerning book and it is well worth a read if you are interested in medicine or science. Even if only half of Goldacre's claims are true then there is something very wrong that must be resulting in real harm to patients. My one caveat on the book is that Goldacre seems to be something of a lone voice on this topic, he states himself that the professional medical associations, medical journals, regulators, legislators and the pharmaceutical industry itself do not see the situation in the way that he does - though the words 'they would say that, wouldn't they?' do come to mind here!

 

On a different topic, I received my ninth round of Trabectedin chemotherapy on 27th/28th December. As usual the infusion itself went smoothly and I wait to see how the side effects develop this cycle. I've been having increasing issues with fluid retention so that's my main concern.

 

Finally, to close this post, a couple of recent night shots of Bath abbey.

 

 

Merry Christmas!

 

As  you can see, we're all set for Christmas. Our tree is around 9 feet tall, it should be interesting getting it back out of the house after the festivities are over. We're looking forward to spending Christmas at home and have both Katie and my families coming to visit during the next few days. 

 

The timing of my treatment has worked out very well. I was due to have my next chemotherapy on December 25th, I'm very pleased that the hospital don't schedule chemotherapy on Christmas day or Boxing day and I'm now due to go in for cycle nine on the 27th. I had a routine appointment with my oncologist on Thursday; I told him I was hoping to have a glass of wine sometime during Christmas, he checked my latest blood test results and said that it would be ok for me to do that - hooray! 

 

Last week I read the results of a phase II clinical trial that looked at the use of a drug called Sorafenib in the treatment of advanced soft-tissue sarcomas (LMS is a soft tissue sarcoma). The results suggest that Sorafenib may be a useful treatment especially for people who have had a number of prior chemotherapy regimes. Of 35 LMS patients in the trial, 38% experienced a six month period during which their tumours did not progress further following treatment with Sorafenib. Whilst the small sample size means that the results must be treated with caution, they indicate a  similar level of effectiveness to many of the approved LMS chemotherapy agents.
 

Sorafenib is not the only drug for which trial results published in 2012 suggest usefulness in the treatment of LMS, similar findings came out of a phase III trial of Pazopanib. These drugs are not cures but they do provide additional options for patients that have exhausted the exisitng approved systemic treatments of which there are relatively few. It is great to see that today there are new treatments being identified for LMS as for many years there has been very little progress on the treatment of this disease. Here's hoping that there are more developments in the treatment of this and other cancers in 2013.

Merry Christmas to you and your families!

 

 

 

Chemo is like a box of chocolates...

Well, not really - I like chocolates! Paraphrasing Forrest Gump's famous line

 

'My momma always said, "Life was like a box of chocolates. You never know what you're gonna get."'

 

does seems appropriate though when I compare how I feel after my most recent chemo, which I received last week, and how I felt at the same time in my previous cycle. For no particular reason I can think of I've been feeling much better this time around. Almost all the side effects have been less pronounced and I've even felt well enough to be able to walk into town to join the christmas shopping crowds. It is only day six of my cycle as I write this so I hope I'm not speaking too soon, but cycle eight has started well.

 

I went out to Slimbridge for a morning a week or so ago, it was pretty slow up there but I did find an obliging mute swan to snap:

It's my 44th birthday today and Katie is cooking me "toad in the hole" with onion gravy as a treat - one of my all time favourite foods and one of the best reasons to look on the "bright side" that I can think of!

 

Good news on my scan results

I received the results of my latest scans today. I'm pleased to be able to write that the scan of my brain showed no abnormalities and that the scan of my chest, abdomen and pelvis shows that the cancer there is stable. This is a good result. Trabectedin, the chemotherapy that I am being treated with, does not usually produce shrinkage of the tumours - stable disease is a success with this drug. My oncologist seemed pleased with how things are going and the plan now is that I will have three more cycles of treatment before being scanned again.

 

As I've noted before Trabectedin is a very expensive treatment, each dose costs several thousand pounds. One of the key reasons why this drug is available on the NHS is that the Spanish company that market it, Pharma Mar, have agreed to pay for the drug for any patients receiving more than five cycles of treatment. I've had seven cycles so Pharma Mar is now paying for the drug related part of my treatment costs. Drug companies sometimes get criticised for the costs associated with their products however, as Pharma Mar has shown with Trabectedin, they are sometimes able to put in place schemes that enable patients to access drugs that would otherwise not be available. Well done Pharma Mar and well done to the NHS for securing a good deal!  

 

Here's a recent photo that I took of a view over Bath. This shot was taken from the National Trust land that is adjacent to Widcombe Hill and shows the view looking to the north west over the Recreation Ground to the slopes of Lansdown Hill. St. Stephen's church tower is visible in the top right of the image with Camden Crescent just below it.

 

 

My fund raising efforts continue to go well with over £1,300 raised so far. Thanks again for everyone's support and generosity in making this possible. Anyone wishing to contribute can find out more on my website:

 

www.paulwaldron.net  

 

 

Hitting the target

I've got some good news to report regarding the fundraising that I've been doing. I originally set myself a target of raising £1000 for Cancer Research UK, I'm really pleased to say that I've now hit that target thanks to the generosity of family, friends and colleagues. The total stood at £1002 as at 7th November.

 

My sincere thanks to all who have contributed - £2000 is the next target!

 

 



I had my most recent chemotherapy back on the 30th/31st October. The side effects took a slightly different course this time around, I've had much more fatigue than in previous cycles though I'm pleased to say I'm feeling a lot livelier again today. 

 

I've now completed seven cycles of treatment using Trabectedin. I had a CT scan today to check on how my tumours are responding. In addition to scanning my abdomen and chest, the oncologist also had them scan my head. I was beginning to think that the docs had forgotten the mysterious brain problems that I had right back at the start of my illness but clearly I was wrong. The doctors were never able to work out what had caused the brain issues though they thought that these must be related to my cancer. I should get the results from today's scan at my next oncology appointment on 22nd November. 

 

I don't seem to have done a very good job this year in terms of autumnal photography. Here's one from a recent trip to the National Trust's Stourhead, it was too early for the best of the colour but the scenic walk around the lake is beautiful at any time of the year.

 



This fine red deer stag was keeping a very close eye on his ladies; this shot was taken early on a frosty October morning at Ashton Court in Bristol.

 

 

Help me raise money for cancer research

The more I find out about cancer the more important I believe cancer research to be. Over recent years there have been some significant breakthroughs in the understanding of cancer, in a number of cases these have led to the development of new and much improved treatments. Simultaneously, these breakthroughs open up many promising new avenues of research that will one day produce further advances in treatment - assuming that funds can be found to conduct the necessary work.

 

As someone who is benefiting from the outcome of previous research programmes, I recently decided that I'd like to raise some money for Cancer Research UK. To do this I've come up with the idea of producing and selling a photo book containing my favourites from the wildlife images that I've taken over the last few years, I've called this book "Wild Portraits", here's the cover of the book:

 

 

I've chosen to donate the money raised to Cancer Research UK. They are one of the largest cancer charities in Europe and fund research into all aspects of the disease. Developments in cancer research benefit cancer patients from around the world so discoveries made by Cancer Research UK help patients both at home and abroad.

 

The book is available in two forms. If you have an iPad you can purchase it as an iPad eBook for £4.99. I also have a limited number of hard copies of the book for sale at £20, if you would like one of these then let me know. 

 

If you prefer you can support my fund raising efforts without purchasing a copy of the book by making a donation via my 'just giving' page.

 

For full details on how to purchase the iPad eBook or on how to make a donation just visit my website www.paulwaldron.net. This site also contains links where you can view a preview of the book and where you can see how my fund raising effort is progressing.

 

Many thanks in advance for your support!

 

 

 

 

  

Another treatment delay

Yesterday provided a reminder that I really shouldn't take things for granted with this disease. I was due for my seventh cycle of treatment with Trabectedin but it had to be postponed because my neutrophil (white blood cell) count was too low. The same problem delayed the start of my second, third and fourth cycles of treatment. However, since changing from a three to four week interval between cycles, I had assumed that my blood count wouldn't be an issue going forward. The oncology ward doesn't have a bed available on Monday so my treatment is now scheduled for Tuesday next week. 

 

In most people the drug causes their neutrophil level to drop just a few days after they receive the Trabectedin, however in my case the delay between the drug entering my system and my neutrophil count dropping is much longer. I've spoken to the oncologist about this and there are three ways to manage it. The first is to increase the delay between treatments, the second is to reduce the dose and the third is to use drugs to try and boost my immune system. We've tried the first of these so it will be interesting to see if the oncologist wants to look at options two or three. The problem with options one and two is that they reduce the total amount of Trabectedin received, something that is likely to reduce how effective the drug is.

 

Assuming that my next scan shows that Trabectedin is still working then my main concern is that I might eventually be forced to stop taking it because my blood count issues mean I can't get a high enough dose to sustain an impact on the cancer. On the bright side I've been quite lucky not to have picked up any infections so far despite spending considerable periods of time with an impaired immune system.

 

Something a little different from me on the photographic front for this post. Recently Katie and I went to a US civil war re-enactment that was held at the American Museum in Bath, I don't usually take pictures of people but I decided to give it a go and here are a couple of the results.

 

 

 

 

Treating LMS: Part II

In my last post I discussed how the classical types of cancer treatment (surgery, radiotherapy and chemotherapy) can be used to treat LMS and explained some of the limitations of these treatments in regard to my own case. In this post I look at some of the more recent forms of cancer treatment and consider how these might apply to LMS.

1. Targeted Therapies. Gastro Intestinal Stromal Tumours (GIST for short) are a form of cancer that has some similarities to LMS. Up until a few years ago patients who had inoperable GIST found themselves with an extremely poor prognosis. In the late 1990's a new drug was discovered, Imatinib (sold as Glivec in Europe). This drug was one of the first examples of a "targeted therapy". Rather than indiscriminately killing fast dividing cells (the mechanism through which chemotherapy works), Imatinib targets only cells that express a particular genetic mutation. That mutation is absent from normal cells but present in many GIST tumour cells. Imatinib represented a massive improvement in the treatment of patients with GIST and has resulted in significantly extended lifespans. The range of cancer types for which targeted therapies exist is slowly expanding and now includes some forms of common cancers like breast cancer and lung cancer.
   
   There is no targeted therapy available for LMS today. However, earlier this year a group of researchers published a paper in which they identified two drugs as candidate targeted therapies for some LMS tumours (Cantharidin and MG-132). There is a huge amount of work to be done to investigate these drugs further but this research paper does raise the possibility of a targeted therapy for some LMS tumours becoming available in the next few years.
    
2. Immunotherapy. The immune system is often 'disarmed' by cancer cells so that they are not attacked by it. In some cases, cancer cells may actually evolve mechanisms that trick the immune system into working on behalf of the cancer by helping it to invade tissue. Immunotherapy looks at how the immune system can be triggered to recognise cancer cells as something it should attack.
   
   As with targeted therapies, there is no proven immune system therapy available today for LMS however, in January 2012, a research paper was published in which a protein, CD47, was identified as playing an important role in preventing immune system cells from attacking some types of LMS cancer cells. Furthermore, the researchers found that by using anti-CD47 antibodies it was possible to reactivate the immune system so that it attacked LMS cells in mice producing a significant reduction in tumour size. Further work is now underway to investigate this therapy with the intention of performing a clinical trial in humans in the next year or two.
   
   
3. Anti-Angiogenesis Agents.  Cancer cells need a rich blood supply in order to grow. To get this blood supply the cancer cells issue chemical signals that stimulate the growth of blood vessels ('angiogenesis' is the name given to the growth of new blood vessels). Finding a way to block the growth of these blood vessels offers a way to 'starve' tumours of the nutrients they need and is, therefore, a route through which cancer can be treated.
   
   Earlier this year the USA's Food & Drug Administration approved the use of the anti-angiogenic drug Pazopanib in the treatment of a number of types of sarcoma including LMS. Approval was granted based on the outcome of a trial which showed that Pazopanib could block tumour growth for some patients although in general this effect was only sustained for a relatively small number of months. Whilst it has not been approved in the UK National Health Service yet, Pazopanib is already being used to treat some UK based LMS patients and so is a potential option for me to consider in the future. 

The research outlined above offers real potential for advances in LMS treatment. It is important to realise that developing a new treatment is a long road with many hurdles that must be overcome and the vast majority of therapies fail on route. Despite that, these new forms of treatment do offer potential for a breakthrough and therefore provide some hope to people in my situation. I will post more about these treatment types as and when there is news on their development.

 

I'll end this post with a splash of colour from a recent trip to the zoo, a blue and gold macaw.

 

 

 

 

 

Treating LMS: Part I

Over the last eighteen months or so I’ve spent a considerable amount of time researching my illness and its treatment. I thought it might be of interest to share a summary of my understanding from this research focusing on where new developments in treatment might be of help to me. I’ve decided to split this into two blog entries, the first looking at well established cancer treatments and the second at some of the newer therapies.

Classically there have been three main techniques for treating cancer, including LMS:

1. Surgery. Surgical removal of cancerous tissue can be performed in order to cure the disease (by removing all trace of it from the body) or it can be palliative (removal of tumours that are causing the patient to suffer symptoms with the aim of relieving these). For LMS surgery is considered the ‘gold standard’ treatment and the best hope of a cure. For curative surgery to be viable it must be possible for the surgeon to remove all of the LMS tumours and a sufficient margin of healthy tissue surrounding them to ensure that all of the cancer cells have been excised.
   
   In my case curative surgery has never been judged a viable option as the cancer is in too many parts of my body, too close to vital tissues and, in my liver, takes the form of many ill defined and diffuse tumours. What’s more the fact that my cancer has already demonstrated the capability to spread to distant parts of my body means that surgery would be very, very unlikely to remove all the cancerous cells even if all the tumours visible on CT scans today could be removed.
   
   Whilst surgical techniques for removing tumours are improving all the time, for instance with the use of robots to assist surgeons in operating with greatly improved accuracy, nothing in my research makes me hopeful that curative surgery could become something of use to me based on these developments alone.
   
   Whilst it is extremely unlikely, should I have a near complete response to my current or a future chemotherapy treatment resulting in the vast majority of my cancer vanishing and leaving just a handful of tumours I would discuss curative surgery again with my oncologist. I should make it clear though that removal of all the tumours in my body is unlikely to remove all of the cancer cells so there would be a high probability of a reoccurrence. 
   
   Palliative surgery could be of use to me in the future, particularly in regard to the abdominal tumours I have which, if they should grow, could cause blockages in my digestive tract that could be life threatening if not removed.
   
   
2. Radiotherapy: Solid tumours, such as those found in LMS, can be destroyed by exposing them to radiation. In the past Katie and I have discussed the use of radiation with my oncologist particularly in regard to its suitability to target my liver tumours. My oncologist consulted a colleague from the Royal Marsden’s sarcoma centre and they both agreed that the treatment would not be suitable in my case.
   
   As with surgery, radiotherapy techniques are improving all the time especially with the use of computer controlled machines to administer the treatment in safer and more accurate ways. However the number and diffuse nature of my liver tumours continues to make them unsuitable candidates for this kind of treatment.
   
   There is another, more fundamental factor that indicates against the use of radiotherapy in my case. There is evidence that cancer cells in which the TP53 gene is damaged may not respond well to radiotherapy as it is thought that radiotherapy kills cancer cells through a cellular pathway that requires functioning versions of this gene. Furthermore, for people with one mutated copy of TP53 in their normal, non cancerous cells there is an increased risk that exposure to radiation could cause additional cancers. 
   
   
3. Chemotherapy: Chemotherapy is a systemic treatment that exposes all cells in the body to cytotoxic (cell killing) chemicals. These chemicals are generally designed to target cells that are dividing, a behaviour that is particular prevalent in cancer cells. All of the treatment I’ve received to date has been chemotherapy; I've just completed my 15th cycle of treatment today and have received 27 infusions of chemotherapy drugs in total.
   
   LMS is not the most responsive cancer to chemotherapy and most of the recognised drugs used to treat the disease have relatively low rates of response. Research also shows that the response rate to chemotherapy in LMS decreases with each different agent used. Cancers also have an annoying habit of evolving immunity to cytotoxic drugs to which they are exposed.
   
   There are a couple of significant areas of advance in chemotherapy treatments; the first is the introduction of new agents approved for use in LMS. Trabectedin, the drug that I am currently using, was only approved for use in the last few years. The second area, not to be underestimated, is that progress is gradually being made in finding ways to better control the side effects produced by these very toxic chemicals. The importance of this second point cannot be overstated given that many patients have to discontinue their use of chemotherapy treatment because of the severity of the side effects.
   
   There are a number of clinical trials running today that are looking at the efficacy of several new chemotherapy drugs or at the efficacy of combinations of drugs in sarcoma. Trials take several years to run and then the process for drug approval by NICE can also take some considerable time so even if some of these trials identify effective drugs it will be some time before they are available to be used outside of the trial environment.  The research that I’ve done doesn’t suggest that any of the drugs currently in trial are likely to provide significantly better response than the existing approved agents. 

In conclusion these classical approaches to cancer treatment, once curative surgery is removed as an option, are all essentially palliative in nature in LMS. Based on my research it seems highly improbably that any of these treatments are likely to offer, in the near future, a means to a cure in my case. That’s not to say there is no hope here at all but we’re looking at very, very long odds indeed; however the improbable sometimes happens, I guess I’m looking for a good ‘black swan’ event!

In the meantime systemic chemotherapy has been doing a useful job for me in terms of palliative treatment and I’m hoping that the Trabectedin continues to perform for many more cycles. Radiotherapy and surgery may be useful in the future depending upon the course of my disease and my requirements for symptom relief. Then of course there are the less well established treatment types which are the subject of my next post.

 

 

Scotland

This is my first blog post since the 2nd of September as I haven't had anything to report regarding my illness in recent weeks. Being on a four week treatment cycle certainly has benefits, I get substantially longer periods of time during which I have few or no side effects from the chemotherapy and this makes being on treatment much more tolerable. I'm due to have my next chemotherapy treatment this coming Thursday and Friday with my next scan scheduled for the week of 5th November.  

 

Katie and I have been on holiday to Scotland for a week. The main aim of the trip was to see some of the local wildlife. We were lucky enough to see most of what we wanted to including dolphins, badgers, three species of deer, a number of species of birds (including a fishing osprey), some very cute red squirrels and a pine marten. Here are a couple of those red squirrels:

 

 

 

 

Aside from the wildlife the scenery is also quite something, especially when the sun shines.

 

 

We're hoping to return to Scotland in the spring or early summer next year. I've discovered an estate near Aviemore that has a photographic hide overlooking a pool in which osprey fish and I'm very keen to have a go at photographing the action.   

Latest treament update

I received my fifth Trabectedin treatment last week. It certainly feels better going into hospital on the back of my  positive scan result, it makes a lot of difference to know that the cancer has been responding.

 

In discussion with my oncologist we've decided to switch from a three week to a four week treatment cycle as my blood counts are consistently too low to enable me to receive the treatment three weekly. On the downside this means that my tumours are being exposed to the Trabectedin less often than is recommended but there are a couple of significant positives too, the first is that being on a four week schedule gives me a whole additional week to get over each cycle, something that could be very useful if I am on the drug long term and secondly the four week schedule should allow Katie and I to make plans much more reliably than we've been able to whilst I've been on the ever slipping three week schedule. The positive results shown by my scan were achieved when I was having the drug once every 25 or 26 days so extending to a 28 day cycle will hopefully not reduce the effectiveness of the treatment.

 

The patient in the next bed to me in the ward on Friday was a sixty four year old man with terminal lung cancer. He's a smoker and was in no doubt that that is what has caused his illness. Despite this he's still smoking - though he did say he had cut down a bit. As he said the damage has been done and there is not much point in him trying to give up now. I don't want to preach but if you are a smoker you really should stop, it's just about the most important step you can take to reduce your risk of cancer.

 

The rugby season has started and Katie and I are hoping to take in a few matches over the coming months. We went along to a pre-season game between Bath and London Welsh, I took my camera - here's the Bath wing Tom Biggs having a bad hair moment as he offloads the ball in a tackle.

 

 

 

 

 

 

  

 

 

Here's to Ecteinascidia Turbinata

Today has been a very good day, Katie and I got the result of my most recent scan which showed that the current chemotherapy has had a significant effect on my tumours. It's very difficult to give a quantitative estimate, but from comparing my two most recent scans I would guess that the largest tumour in my liver now has a radius that is between two thirds and a half of what it was in April. The radiologist's report states that all the tumours are shrinking. The statistics suggest that Trabectedin produces significant shrinkage of tumours in fewer than 20% of LMS patients so it was far from a foregone conclusion that the drug would work.

As I noted in a previous blog entry the active compound in Trabectedin was first identified in a Sea Squirt -   Ecteinascidia Turbinata, hence the title of this post. To celebrate our good news Katie and I went to the pub on the way home from the oncology clinic. I had half a beer and Katie and I toasted our new favourite marine filter feeder. I'm not supposed to drink alcohol whilst on Trabectedin but there are times when a beer is essential. It was the first alcoholic drink I've had since mid-April and it tasted very good!

The plan now is to continue with further cycles of Trabectedin for the next three months; I will then have another scan to see if it is still working. While the tumours continue to shrink or remain stable in size and I continue to be able to tolerate the side effects I will stay on this drug. My oncologist told us that he has a patient who has been on Trabectedin for over a year and there are examples of people who have had the drug for considerably longer, so I'm hoping for a good run here.

On Friday last week Katie and I got up at 5am and drove over to Dundry Down, a hill just to the south of Bristol. We went there to watch the mass ascent of balloons at the Bristol Balloon Festival. The balloons are launched from Ashton Court Estate and the launch site is visible from Dundry Down. It was pretty misty so it was not much of a day for photography, however I did manage to get a few shots that I could salvage on the computer. The distance from the hill to the launch site is around three miles as the crow flies, so taking that into account along with the mist this one has come out reasonably well: 

“Fighting cancer” – a personal view

Current and recovered cancer patients often refer to their experience with their disease as a fight, a battle or a war. Nothing here is intended as a criticism of those who view their experience in those terms, indeed it is clear to me that for many cancer patients this is a useful paradigm, however I can say that it’s not one that appeals to me.

A number of members of the LMS e-mail forum that I subscribe to refer to LMS as a ‘dragon’ and to their own experience as ‘attempting to slay the dragon’. This is not a metaphor that works for me, if I saw a dragon I would be thrilled, delighted, awed and very keen to photograph it (ok, I might be petrified and surprised too)! The thought of slaying virtual dragons is not something that brings me positive feelings.

When I was first diagnosed with cancer I sent an e-mail to some of my colleagues to update them on my situation. In that e-mail I made a reference to my intention to fight the disease. At that time I hadn’t had chance to really understand my feelings about being ill and my thoughts were shaped in part by a thought that others would expect me to adopt an aggressive attitude towards my condition. One of my colleagues replied to my message by writing that looking at engaging in a battle with cancer might not be the best way to proceed. He’d read something that suggested that entering fight mode might promote emotions that are not conducive to healing. He suggested it might be better to consider my chemotherapy treatment as a flock of sheep nibbling on the green grass of the tumours! Whilst I found this rather bizarre bucolic image to be amusing it did tally with my feelings towards my cancer.

Since becoming ill in February 2011 I’ve been very lucky in that I've managed to retain a positive outlook most of the time. Sure there have been some pretty low points, particularly around those times when we’ve received negative news on the progress of the disease or its treatment, however in general these moments have been short lived and I’ve soon returned to an even emotional keel. Frustration has perhaps been the most common negative emotion I’ve felt, this in regard to the disruption the illness and its treatment have caused to my life and to Katie and my ability to plan and to travel, but again this is not a feeling that dominates my waking hours.

In terms of my disease I have felt very few negative emotions towards it. I think this is because I see my cancer as almost certainly being the result of the TP53 genetic mutation that I posses. There is no external pathogen that is causing my disease, the tumour cells are my own cells albeit with mutated DNA and those mutations have themselves taken hold because of an inherent part of my genetic makeup. Anyway I find myself without any anger or rage to direct at my cancer.

When I think about addressing my illness it is usually pleasant and positive emotions that I feel more comfortable with. In the main these thoughts and feelings are about nurturing my body, healing, calmness, the beauty of the natural world and taking pleasure in everyday life. I also feel very motivated to control the amount of time I give to my illness, I have a lot of things to do that are more fun than researching my medical condition or attending medical appointments. Fighting a battle is a full time job and I do not feel that would be time well spent for me.

I want to make it clear that I don’t see my approach as giving up or risking a worse outcome, I just see it as a way of managing my condition that is true to my feelings and true to my goals of balancing both my quality and quantity of life. I like to be guided in my approach to my cancer by scientific evidence and to date I’ve seen nothing to suggest that the mental attitude of cancer patients influences the outcome or duration of their illness. Mental attitude is, of course, very important in determining the quality of a cancer patient’s life, but in my view quality of life may be better influenced through positive emotions than through the emotions associated with battle.

As I wrote at the beginning of this blog entry, I understand that many people find tackling their disease as if it were an opponent in a battle to be of great utility, however this approach is not right for me. If having cancer is a war then I guess that means that I am a conscientious objector and I'm very comfortable with that.  

Hello to the London Olympics

I'm really looking forward to the Olympics. They officially open on Friday but have already got off to a good start with GB's women's football team beating New Zealand this afternoon. I don't really have much in the way of Olympic themed photographs but here's a recent shot of the Tyne Bridge in Newcastle complete with Olympic rings...

Hopefully the first British gold will come on Saturday with Mark Cavendish and friends in the men's cycling road race.

I was due to have my latest chemotherapy treatment on Monday of this week, however my white blood cell count was too low so the treatment has now been postponed until Monday 30th. If you've been following this blog you will know that this was not unexpected. I was due to have a scan next week but this has been moved back a week as the oncologist wants me to complete four cycles of treatment before he assesses whether or not the drug is working. I should get the results of that scan on Thursday 10th August. 

Whilst I hope very much that the Trabectedin is having a positive impact on my tumours I've been researching alternative treatment options just in case. It's important to have a list of options to discuss with the oncologist and the old maxim of "hope for the best but prepare for the worst" is certainly one that seems appropriate in this situation.

Exmoor

Katie and I spent a few days in north Devon last week. We stayed in a cottage in a small village just south of Exmoor. A combination of poor weather and chemotherapy related fatigue meant that we didn't get out and about as much as we'd have liked but it was still an enjoyable trip.

The moor itself doesn't appeal too much to me but the coastal scenery is stunning as are the river valleys and coastal forests of the area. The trees in the forests are festooned in moss and lichen with lots of ferns and bracken covering the woodland floor; they remind me of the temperate rain forests I've seen in some other parts of the world, notably British Columbia.

Katie and I last visited Exmoor in 2009. At that time we were in training for the gorilla trekking trip we made to Uganda in the September of that year. We were spending as much time as we could walking in order to build our stamina and Exmoor provided some great terrain to practice in. This time around I found myself struggling to walk more than a short distance; the last round of chemotherapy took more of a toll on me physically than I initially realised. As the week went on I did make a recovery and on our last day we were able to take advantage of some rare sunshine to walk through some of the most beautiful English coastal scenery, the photo below is typical of the view:

I'm due to have my next treatment on Monday though that assumes that my white blood cell count will have recovered sufficiently, something that remains doubtful given the experience from the previous two chemotherapy cycles.

 

Latest round of treatment completed

After two failed attempts to have my latest round of treatment last week my white blood cell count finally crossed the line yesterday and I was able to proceed with the Trabectedin.

All went well with the infusion. As usual the large dose of pre-med steroids gave me a completely sleepless night yesterday so I am little tired tonight. That's the third cycle of treatment completed, I'm going to have a scan after the fourth. Given that I've had to delay this and the previous treatment both by a week I wouldn't be surprised if that happens again next time, in which case I will get the scan results in five or six weeks from now.

Katie and I don't usually have much luck seeing owls, but this year we've had two great sightings so far, a fantastic view of a barn owl during our trip to Norfolk in February (guess who had their camera in the boot of the car at the time) and one of a very obliging Little Owl during our trip to Rutland Water a couple of weeks ago. Yet again the camera was in the boot but the owl waited while we drove out of sight so I could get out of the car and retrieve the camera without spooking it.

Missing neutrophils

I was scheduled to have my most recent round of chemotherapy on Wednesday of this week, unfortunately when I went to the hospital a blood test showed that the level of neutrophils in my blood were too low to proceed. Neutrophils are a type of white blood cell. I tried again on Friday with the same result and am now scheduled to have another go on Monday, third time lucky I hope!

The delay pretty much mirrors what happened ahead of my last round of chemotherapy where I had to wait a week for my neutrophil count to recover. As this has now happened twice I suspect that the oncologist may want to adjust some aspect of the treatment or move me to a four week cycle so that I can resume a more predictable pattern going forward. In the absence of having chemotherapy I've been feeling very well.

I've recently bought myself a trail camera. This is a camera that is designed to be left outside for long periods, it's triggered to take a short video or a still photograph when it detects movement using a PIR sensor. The camera works in daylight and is also capable of recording images at night using infra-red. Katie and I bought the camera as we suspected we might have badgers visiting our front garden from time to time. On the second or third night that we left the camera outside it recorded the following:

(If you have trouble viewing this video, you can see it on youtube at this link: http://www.youtube.com/watch?v=Nj4vrLLSX_Y&feature=g-upl).

I'm looking forward to trying the camera out in various other locations now. Katie's mum thinks she may have foxes visiting her garden so that is the next venue we'll try.

Northumberland

There hasn't been much for me to report on the medical front these last couple of weeks, a situation I'm quite happy about! Last weekend Katie and I decided to go away for a few days. We headed first to Rutland Water to see the ospreys (you can check out the nest on the web cam here: http://www.ospreys.org.uk/webcam/), then headed further north to stay a few days in Alnmouth in Northumberland.

On the Saturday we had arranged to be taken out by a local wildlife guiding company to look for red and black grouse and short eared owls on the North Pennines but the evening before our trip they advised we cancel due to the forecast rain and wind. We decided we'd spend our day visiting Newcastle instead. We enjoyed the art galleries and museums, the highlight of which was a visit to the Baltic Centre for Contemporary Art. Most "contemporary art" isn't really to my taste but it was impossible not be impressed by Janet Cardiff's "The Forty Part Motet". She has taken an arrangement of the choral piece "Spem in Alium Nunquam Habui", written in 1573 by Thomas Tallis, and recorded each of the forty voice choir on individual tracks that are then played back through forty speakers arranged in a circle around the audience. The effect is very compelling, hearing the music coming from every angle, almost like sitting in the middle of the choir during a performance but with every singer facing the listener. I couldn't help wondering what Mr. Tallis would think if he could be placed in the centre of the bare white room surrounded by the forty strange black boxes from which his music flows.

Whilst the weather was grey and wet for most of our time in Northumberland we were very lucky to enjoy a day of unbroken sunshine on Monday when we visited the Farne Islands. I spent a couple of hours trying to get a picture of a puffin in flight with a mouth full of sand eels, not an easy shot as they fly very fast when they come back into the islands. I didn't quite get the photo I wanted, but did manage one or two reasonable efforts:

My next chemotherapy cycle is due to start on Wednesday so I'll post a further update once I'm back at home after that. 

A night on the oncology ward

I went into hospital yesterday morning for a further attempt at having my second round of Trabectedin chemotherapy. A blood test showed that my white blood cell count had recovered to an acceptable level, this was quite a relief as I feared that another treatment delay would have raised concerns around my ability to continue to use this particular chemo agent. Although I arrived at the ward about 9:40am it wasn’t until after 6:00pm that the chemotherapy infusion was started. Trabectedin costs over £3,000 per treatment (that’s for just 2.9mg of the drug!) and has a shelf life of only 30 hours, it’s understandable then that the pharmacist won’t make the drug up until all the tests have been done and a doctor has given the go ahead for the treatment; inevitably this process causes some delay. Once the Trabectedin infusion is underway there is nothing further that needs to be done by myself or the medical team for the following twenty four hours. I passed the time reading (the latest Iain Banks novel ‘Stonemouth’ – those who enjoyed his other books are likely to enjoy this one too I think), creating a photo book on my laptop, listening to the radio and watching TV.

I had a large dose of steroids before starting the treatment, this was to limit any nausea but unfortunately it also seemed to give me insomnia; the oncology ward is not the easiest place to sleep in anyway. The ward is split up into side rooms each of which contain four beds. Judging from my first two stays in the ward most patients are having chemotherapy or intravenous antibiotics, in either case they are hooked up to IV pumps. These pumps are surprisingly noisy, repeatedly making rhythmic whirring, clicking, dripping and ticking noises. The pumps alarm whenever they detect that an IV feed has finished or that there is a blockage in the flow. With three pumps running in the side room I guess that I was treated to the repetitious “de..derr...de..derr” sound of their alarms around 20 times during the night, it reminded me of my early days providing 24x7 on call IT support at work! Lights out in the ward is at around 11:30pm although it never gets very dark in the room thanks to the glowing displays of the pumps and to the light that leaks in from the permanently lit ward corridor and through the uncovered windows through whose dirty exterior surfaces the sodium glow of the city diffuses. I was quite pleased to see the orange light slowly turn to pre-dawn grey soon after 4:00am this morning.

Apart from the insomnia my experience from two stays on the ward has generally been positive. The staff are friendly, kind and seem to know their stuff, the food has generally been up to a reasonable standard and the overall environment is pleasant.

Just before lights out last night there was a different kind of alarm that went off in the ward. On hearing it the nurse who was tending to another patient in the side room I was in immediately stopped what she was doing a literally ran out through the swing door and off in the direction of the high dependency area of the ward. As the door swung close I heard more running footsteps as other members of staff hurried in the same direction. I guess that one of the staff in the high dependency unit needed assistance to help a patient experiencing some form of crisis. It was a sobering reminder of the nature of this ward and of just how seriously ill many of the patients are here. It also put my experiences into a more relevant frame of reference and reminds me how fortunate I am to be able to still lead a relatively normal existence over a year since my diagnosis.

Talking of which, since my previous post Katie and I spent a beautiful sunny day at the International Birds of Prey Centre in Newent, Gloucestershire. I highly recommend it to anyone who is interested in birds or bird photography, here's one of the most colourful characters at the centre, a King Vulture:

  

Unexpected delay

I was due to have my second Trabectedin treatment today, however this has been delayed because I have too low a level of neutrophils, which are a type of white blood cell. The hospital is trying to reschedule my treatment for next week but this depends on the availability of a bed. I'm waiting for a call to confirm when we can try again.

Delays like this are non-optimal in terms of treating the cancer but are not uncommon with chemotherapy. I hope that my blood count recovers in time for the next attempt at treatment. One of the practical problems with the change to my treatment schedule is that the dates on which my immune system will be low have all changed too, this means that we may need to change some of our social plans which makes us very unreliable friends!

As ever there is a silver lining to be found, in this case the delay means that Katie and I have a free day tomorrow. Hopefully the weather will remain good and we'll be able to get out and about somewhere, no doubt I'll be taking my camera with me!

 

Update & Pazopanib

I saw my oncologist today, he's satisfied with the way the first cycle of the new chemotherapy has gone and, subject to nothing odd showing up in my blood test results, I'll go ahead with the second cycle next week.

Since my last blog entry the side effects from the Trabectedin have been relatively minor. For the first week after having the treatment I had some fatigue, particularly in the afternoons, some fluid retention (but that only lasted two or three days) and some disruption to my digestive system which is still ongoing (I will spare you the details!). I am hopeful that the next cycle will not prove to be a more difficult experience.

There was an interesting development recently regarding the treatment of Leiomyosarcoma. First, the US Food & Drug Administration approved the use of a drug called Pazopanib for the treatment of advanced soft tissue sarcoma and then the results of the phase III clinical trial on which the FDA decision was based were published in the Lancet. In the trial the use of Pazopanib gave "A statistically significant improvement in progression-free survival (PFS) in patients receiving pazopanib compared to those receiving placebo".

Pazopanib is an anti-angiogensis drug, these agents work by stopping tumours from developing the blood supplies they need to survive and grow. There is quite a lot of research into anti-angiogensis agents and Pazopanib is one of several that are being tested for efficacy against various cancers.

The development of a new treatment for soft tissue sarcoma is something that happens very rarely so it's really positive to see the trial results and the decision of the FDA. Sadly Pazopanib is not a cure for the disease and the results of the trial still leave unanswered some key questions about the duration and extent of the benefits of this drug though it is clear that in most cases these last for only a few months. It will be interesting to see if Pazopanib is approved for use in the NHS.

Update on Trabectedin chemotherapy

I had the first instalment of my latest chemotherapy, Trabectedin, this week. All went well and it was a straightforward experience.

In preparation for the chemo I had a PICC line fitted on Tuesday afternoon. This is thin plastic tube that goes into a vein at the top of my arm and runs into the large vein that feeds blood back to my heart. The PICC line allows the chemo drug to be delivered with less chance of damage to my veins and also means that I don't have to have any needles now in order to get blood tests done or to receive the chemo. The PICC line will stay in whilst I continue to be treated with Trabectedin.

I went into hospital yesterday morning to have the chemo. The drug is given through a 24 hour infusion and so requires a one night stay in hospital. The PICC line meant that the experience was pretty non-intrusive and I was back at home early this evening. So far I haven't had too many side effects, I hardly slept last night in hospital, this was probably down to the large dose of steroids I was given before I had the chemo, hopefully I should sleep better tonight. I also had some slight nausea and some stomach pain (both known side effects of Trabectedin) but these have eased off now. I will have to see how things go over the next few days but I'm hopeful the side effects won't be too bad.

I will have further treatments once every three weeks with a CT scan after the third treatment to see if the drug is having a positive effect on the cancer.

Now we know what my chemo schedule is likely to be for the next few weeks Katie and I are planning a trip to Northumberland so that we can visit the Farne Islands to see the Puffins. Here's a shot I got of one of these characterful little birds last year on Skomer in Wales:

It's all Greek to me

Socrates reputedly said that “The only real wisdom is knowing you know nothing”. As I’ve grown older, my experiences have increasingly led me to believe that he was right. I can think of many times in my life when I’ve held strong beliefs that have later been shown to be quite mistaken. For example, to pick just one, I used to think that the UK should adopt the Euro – in retrospect it seems that would have been a bad move!

Socrates’ quote seems particularly apt in the context of understanding cancer. I’ve spent a lot of time reading scientific articles in order to try and understand the way in which the efficacy of specific cancer treatments may be modified by the genetic mutation that I carry in my TP53 gene (see my post “Genetics – a double edged sword” from March). I read one article and it seems to say one thing, then I read another and it seems to say the opposite! I can spend a lot of time reading without acquiring any wisdom. What I’ve picked up from my research is that whilst I might be able to identify interesting questions related to my treatment it is very difficult for a non medically qualified person to answer these. I'll be passing my questions to my oncologist in order to get an expert view.  

Today’s consultation confirmed that my next step is to try another type of chemotherapy, this time using a drug called Trabectedin (also known as Yondelis). I’m hopefully going to start this new treatment on Wednesday next week. This is dependent upon a bed being available in the oncology ward as this chemotherapy is given over a twenty four hour in-patient stay. I have to call the ward on Wednesday morning to see if a bed is available, if not they’ll try and get me in on Thursday or Friday. On Tuesday I will have a ‘PICC’ line fitted in my arm, this will be used to deliver the drug into my body.

Unlike my previous treatments I will continue having this chemotherapy once every three weeks until the chemotherapy either stops working or until I can no longer tolerate the side effects. The specialist sarcoma nurse told me that they have one patient who has had sixteen cycles of Trabectedin though I think the average number of cycles is closer to five. Hopefully I’ll be on this drug for a long time, the only down side to that would be that I am unable to drink any alcohol at all whilst receiving Trabectedin!

At the meeting with the oncologist we also reviewed the last scan that I had in more detail. From this it was clear that the suspect tumours that are showing in my lungs are small at present which was something positive anyway.

Away from my illness Katie and I have had a busy and enjoyable week or so. We’ve been seeing friends, last week I went on a photographic tour of Slimbridge and earlier this week we went down to London for a couple of days; we had a very nice time in the capital enjoying some of the sights and seeing “Billy Elliot” at the Victoria Palace theatre.

Scan results

This morning Katie and I were still feeling dissatisfied with our visit to the oncology clinic yesterday so I rang my oncologist and asked if a radiologist could re-evaluate my last scan today. The oncologist arranged for this to be done and I had a call this afternoon to give me the results. The comparison between my scan of two weeks back to my scan from January shows that the tumours in my liver have grown; it also picked up some suspect growths in my lungs. Sarcoma often spreads to the lungs so it was likely that this would happen at some point. 

My oncologist concludes from this that my cancer is not responding to the Doxorubicin and as a result we’ve cancelled the chemotherapy I had scheduled for Monday. The plan now is that I will start on a new chemotherapy regime using a drug called Trabectedin (also known as Yondelis). Trabectedin is based on a molecule first identified in a sea squirt found on reefs in the West Indies though that molecule is now chemically synthesised for use in the drug. Clinical trials show that Trabectedin delivers clinical benefit to between 30% and 50% of patients who receive it. Clinical benefit means that the patient's cancer shrinks or, more commonly, stops growing for a few weeks or months.

I will have at least two weeks off treatment now to make sure that I am fully over the effects of the last chemotherapy, so I expect to start on the new regime sometime around mid-May (three or four weeks from now).   

In the spirit of the name of this blog and just to remind myself of the season here’s a photo I took last year on a visit to Cricklade North Meadow. We're planning on visiting again this Sunday to see the rare Snakes Head Fritillaries in flower.