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!

 

 

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"

 

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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.