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.

 

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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.  

 

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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.

 

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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!