My lucky fortune cookie?

Last Saturday Katie and I went to the England vs. Scotland Six Nations Rugby match at Twickenham. It's always a great thrill to be part of a crowd of 80,000 singing "Swing Low, Sweet Chariot", especially when England are in a comfortable lead! We stayed overnight in a very nice hotel in central Windsor - a great way to spend the weekend. 

Katie recently found some videos online of presentations from an oncology conference. One of the most interesting items included in these videos was a discussion on the importance of remembering a patient's condition and goals when selecting which treatment to use. The oncologist making the presentation described how three patients with the same disease but in three different situations might end up on different treatments:

1. Patient one is an asymptomatic patient whose cancer has progressed too far to be cured. In such cases the degree to which a given drug may produce shrinkage in the patient's tumours is not of much importance. What is important is selecting a drug that is likely to hold the patient's disease stable for the longest period without causing severe side effects which would compromise the patient's quality of life.
2. Patient two also has cancer that has progressed too far to be cured but in this case the patient's tumours are causing discomfort. A reduction in the size of the tumours may alleviate the discomfort so achieving shrinkage is an important aim of any treatment. In order to achieve the shrinkage the patient may be willing to endure some medium level side effects.
3. Patient three is a patient whose cancer is thought to be curable. Here the degree of tumour shrinkage that the treatment may produce is much more important and the patient is likely to be more willing to accept even severe side effects if the treatment ultimately results in a cure.

Patients one, two and three could all end up selecting  different courses of treatment even though they have the same disease. I've found that my intuitive preference is for treatments that have the best chance of shrinking my tumours even though my condition matches patient one here. I believe this is a common bias amongst people with late stage cancer, it is difficult to get away from the feeling that shrinking the tumours must be the best course of action. In order to overcome this type of bias it is important for patients to double check that their treatment choices really do match their treatment goals. 

 

Finally I had my latest CT scan on Monday with the results due on Thursday 14th February. Waiting for a scan result is pretty stressful. Dinner at our local Chinese restaurant did provide an unexpected moment of light relief tonight when I opened a fortune cookie and found this message inside:

That made Katie and I smile. I just hope it turns out to be as accurate as it is relevant!

  

Update

Here's a quick update following on from my last post. The snow here in the South West meant that I didn't get the ultrasound scan on my legs done until Monday. The scan didn't show any sign of a blood clot which was good news but leaves us none the wiser as to what caused the rash on my ankle last week. The rash cleared up over the weekend anyway, perhaps it was the pint of real ale I had on Saturday that did the trick! I'm not supposed to be drinking during this treatment but given that my liver function is ok at present I'm treating myself to one alcoholic drink every four week cycle. Those pints of beer taste extremely good to me!

 

On Tuesday I had my twisted PICC line removed from my right arm and a new line inserted into my left. I'd had the PICC line since May last year and I was starting to get some skin irritation in the area covered by the dressing, my right arm will get a chance to recover now.

 

The procedure for inserting the PICC line is virtually painless, perhaps the most uncomfortable part was having to listen to a really cheesy 1960's music compilation which included Cliff Richard. I've found having chemotherapy through the PICC line much better than having it via a temporary cannula inserted into the back of my hand. Not only is the PICC line more convenient it also prevents the chemotherapy drugs from damaging the veins in the hands and arms which is something that can happen when chemo is administered via a cannula.

 

My tenth Trabectedin chemotherapy cycle begins tomorrow, blood count and bed availability permitting.

 

Happy New Year

I had what I expected to be a routine appointment with my oncologist today ahead of my next chemo cycle. I've had a rash on my right ankle for the last few days, the oncologist thinks there is a small chance that it could be an indicator of a blood clot so I've got to go back to the hospital tomorrow for an ultrasound scan. I also had a chest X-ray today that showed that my PICC line is a little twisted so they are going to have someone see if they can straighten it out tomorrow. There go our plans to go to the cinema tomorrow afternoon!  

The side effects from the last chemo cycle have been in line with my previous experiences though the fluid retention seems greater with each treatment. I've got an Excel spreadsheet where I track the changes in my weight that the fluid retention causes; the difference between my maximum and minimum weight during the last cycle was over 14lbs - that's a lot of fluid. The extra weight makes me snore so I've been taking Katie cups of tea in bed in the morning to try and keep on her good side!

 

I haven't taken any photos so far in 2013 though I'm hoping to put that right in the next few weeks. I did however have some small success with one of my pictures from 2011, it was chosen as one of nine 'highly commended' images in the 'Travel Icons' category of Audley Travel's 2012 photo competition. There were around a 1,000 entries in that category so I was pleased to get an image in the top ten. Here's the image, "Queen of the Jungle", which I took in Kanha National Park in India:

 

 

Finally, a quick update on my fund raising efforts for Cancer Research UK. Sales of my photo book together with donations have raised £2,248! Once again thanks to all those who so generously contributed - I really appreciate your support. 

 

If you have bought a copy of my book direct from Blurb (either an e-Book or a hard copy) then please note that I don't get visibility from Blurb as to who has made those purchases; it would be great if you could drop me an e-mail or otherwise let me know if you have purchased a book through that route so that I can pass on my thanks to you. 

 

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