Nelson's coat

My new chemotherapy treatment is starting on the 6th February. This is a little later than I would have liked but it is good to have a date in the diary at last. This will use  dacarbazine.  

 

My oncologist has also confirmed that he is happy to prescribe metformin for me alongside the chemotherapy. I will take an escalating dose of the drug during the first two weeks of treatment before reaching a stable dose (1500mg per day). I'm very pleased my oncologist has agreed as this is not currently recognised as a standard therapy for LMS.

 

I like to base my treatment choices on scientific information and my decision to try metformin has been made because of various research findings and a scientific hypothesis that suggest it may be of benefit. These include:

• evidence that shows that people taking metformin to treat diabetes appear to have a lower risk of developing cancer than the general population;
• research that indicates metformin has some level of activity against certain types of cancer cells (including sarcoma cells);
• research that shows that taking metformin in combination with some chemotherapy agents may give a better response than the chemotherapy agent alone and, finally,
• a hypothesis that metformin may have some specific value in reducing cancer risk in people with Li Fraumeni syndrome. 

 

When I consider these factors along with the knowledge that metformin is a very widely taken drug with a relatively low risk profile it seems well worth a go.

 

***

 

Earlier this week Katie and I spent a very good couple of days in London. We packed a lot of sightseeing into our visit with trips to Westminster Abbey, Churchill's war rooms, the Cutty Sark, the Royal Observatory and the National Maritime museum.

 

Sometimes I see something in a museum that really captures my imagine. At the National Maritime museum they have an exhibition on Horatio Nelson. I've been interested in Nelson for many years and have read a number of books on his life so I was really keen to see the exhibition. One of the exhibits is Nelson's coat - the one he was wearing as he stood on the deck of HMS Victory at the battle of Trafalgar.

 

The dark blue of the officer's coat was quite possibly what drew the eye of the French soldier who fired the shot that killed Nelson. The musket ball left a small but jagged edged hole in the shoulder of the jacket. From the position of the hole it is clear that the shot was fired from a high angle, looking down on Nelson - probably from the masts of the French ship, Redoutable.

 

I can't think of ever seeing an object more intimately connected to a moment in history or to the personal fate of a man, recording as it does the day of Nelson's greatest victory and the moment he was fatally wounded, the point at which an already much feted British hero became a national legend. I don't think museum exhibits get much better than that!  

 



Next steps

Katie and I met with my oncologist today to discuss my recent brain issue and to agree next steps for treating my Leiomyosarcoma (LMS). The meeting went very much as anticipated with the doctor largely confirming our current understanding of my condition and the best way forward.

 

In relation to my brain problem, the medical opinion remains that this was probably caused by a lymphoma although it is also possible that it resulted from an unidentified inflammatory condition. Unfortunately there is no straightforward way to differentiate between these two diagnoses. It seems that even a brain biopsy would have a relatively low chance of providing a conclusive answer and it doesn't make sense to have such a risky procedure when it is unlikely to give a definitive result. Both conditions are treated the same way - through steroids. I've been taking these for over a week now and will continue to do so for the immediate future. I have a further brain MRI scheduled at the end of January, this will hopefully show that the steroids have cleared the problem up, at least for now. We did learn today that the neuro-radiology specialists are sure that I didn't have a stroke so I think we can be confident that the steroids are the right treatment approach.

 

I've been getting some symptoms from the abdominal LMS tumours these last few weeks, a combination of constipation, transient abdominal pain and mild nausea. These symptoms are all quite mild at present but they have definitely become more noticeable in recent weeks. Also I can now physically feel the cancer as a hard round lump just below my navel on the right hand side of my body. There is something very disconcerting about this, it's so much more real than just seeing something on a grainy, grey scan on a computer screen. I was very keen then to get agreement today on a new treatment for my LMS. My high blood pressure and heart issues have made the choice of treatment quite straightforward by removing a couple of the possibilities that we'd been considering so I will be starting chemotherapy using a drug called dacarbazine. This drug is given once every three weeks via an infusion which I will receive as an outpatient. I hope to be starting in the next three weeks although I don't have a date as yet.

 

I'm also planning to start taking metformin as part of my treatment. Metformin is a drug that is used to treat type II diabetes but research also suggests that it may have anti-cancer properties. In particular it may help to boost the effectiveness of chemotherapy. Taking metformin is a speculative move as there is no strong scientific evidence relating metformin, LMS and dacarbazine. However, taking metformin is also relatively low risk so it seems to me worth a try. If the side effects of the drug are a problem I can simply stop taking it. My oncologist wants to look at metformin in a bit more detail before confirming he will prescribe it, but he does seem to understand my motivation and reasoning so I'm hopeful he'll agree. 

 

***

 

Generally speaking I've been feeling well so and Katie and I have taken the opportunity to spend time with friends and to enjoy the couple of days when the rain has abated and the sun has shone. We spent a very good morning at Slimbridge at the weekend, it's a beautiful place in the golden light of a sunny winter morning. We've also been trying to increase the amount of walking we're doing as I've been advised that this could be good for my blood pressure. We had a very pleasant and reasonably long walk along the Kennet and Avon Canal on Tuesday, again on a lovely, sunny day.

 

Yesterday we met up with some good friends of ours in Winchester. Winchester isn't a place I've visited before and I was keen to see the cathedral. After a very nice lunch we visited the cathedral in the late afternoon, after sunset. The interior of the church was very atmospheric in the low lighting although it was almost too dark to capture on camera without a tripod. Hopefully this shot gives an impression of what is a very impressive space.

 

 

  

 

 

A mystery solved?

"when you have eliminated the impossible, whatever remains, however improbable, must be the truth", Sherlock Holmes.

 

 

My cancer story began back in February 2011 when I developed obstructive hydrocephalus. This is a condition in which inflammation blocks the drainage of the fluid that surrounds the brain resulting in increasing fluid pressure inside the skull, something which can ultimately be fatal. In my case a CT scan allowed the doctors to make a timely diagnosis and I underwent emergency surgery to fit a pressure relieving drain. I was prescribed a short course of high dose steroids and these quickly reduced the brain inflammation. In fact the steroids were so successful that further CT scans very soon showed that my brain had returned to normal.

 

The neurologist and neurosurgeon treating me wanted to find out what had triggered my problem in the first place. They gave me a battery of tests all of which proved negative until they performed a CT scan on my abdomen. It was this scan that found the tumours that were later discovered through biopsy to be Leiomyosarcoma. At the time of my LMS diagnosis I remember the neurologist and neurosurgeon both being very surprised. They had thought that the tumours were caused by a lymphoma because lymphomas can cause hydrocephalus and often respond extremely well to steroid treatment. LMS, on the other hand, does not typically cause hydrocephalus.

 

The LMS diagnosis left us with no explanation for the hydrocephalus, however the brain is so complex that sometimes these things can occur without a clear cause being identified. My oncologists were aware of this part of my case history and their view was that, in the absence of any further evidence of lymphoma, we should focus on treating the LMS as this was the more immediate danger to me. 

 

You may be wondering why I'm recapping this history here, well the reason is related to the 'stroke' that I had last week. Before we had the radiology report on the brain MRI last Friday my oncologist told Katie and I that he thought the scan could be showing a lymphoma. When the consultant radiologist indicated that the scan was showing a stroke my oncologist had to go along with this, however he was not entirely comfortable so he arranged for the scan to be reviewed at the neuro-MDT meeting today. This is a meeting of specialists in neurology and neurosurgery and is intended to provide opinions on cases in which there is difficulty making a diagnosis or selecting a treatment. The verdict of the MDT meeting was that the brain MRI does not show a stroke, instead it shows inflammation and damage related to a cerebral lymphoma or to an as yet unidentified inflammatory condition.

 

Given that my problems started with an event consistent with lymphoma this new information strongly suggests that I do indeed have this form of cancer in addition to LMS. An interesting characteristic of some lymphoma's is that they can go into long lasting remission when treated with steroids. Since my initial diagnosis I've been receiving a high dose of steroids each time I've had chemotherapy - roughly once a month. This could explain why the lymphoma has been a 'sleeping partner' in my illness to date. Interestingly before tonight I hadn't had any steroids since November (my last chemotherapy treatment), so perhaps the break from chemotherapy explains why the lymphoma has 'woken up' and caused the stroke like event of last week.

 

I looked at cancer incidence rates in the UK tonight and I found that the odds of a specific individual in the UK population being diagnosed with LMS and primary cerebral lymphoma in any one year are just under nineteen billion to one. For context if that same individual were to enter the national lottery just once in that year the odds of them winning would be fourteen million to one, i.e. they would be more than a thousand times more likely to win the lottery than to be diagnosed with these two rare cancers!

 

You have to be careful with statistics however as the calculation above gives the odds for a person who has an average risk of developing each of these two conditions. In my case there is a reason to think that my chances of developing both of these cancers is unusually high - that's my Li-Fraumeni Syndrome. This very rare genetic condition predisposes me to certain cancers. Sarcoma is closely associated with this syndrome, someone with Li-Fraumeni is known to be at much higher risk of sarcoma than the general population. Whilst not as closely associated with the syndrome as sarcoma, there is also an increased risk of developing non-Hodgkin's Lymphoma.

 

So we now have a much tidier hypothesis for my complex cancer history. My Li-Fraumeni syndrome facilitated the development of two otherwise very rare cancers simultaneously. The lymphoma caused the hydrocephalus and was then sent into a long lasting remission by the continued exposure to steroids. Meanwhile, in investigating the cause of the hydrocephalus my LMS was discovered. When my last treatment for LMS failed I went onto a treatment break for a couple of months allowing the lymphoma to resurface and to cause the brain problem I had last week.

 

In terms of treatment for the lymphoma the initial step is to try a course of steroids and then to check via brain MRI if these are working. I've had the first of the steroids tonight and I'm hoping that these will put the lymphoma back into remission.

 

That's the theory then, of course nothing is certain - hence that lingering question mark in the title of this post.

 

 



Early release

I really must stop taking things at face value where my illness is concerned. Yesterday I was told that I would definitely be in hospital until Monday, however when I saw the stroke consultant today she had a different view and I'm very pleased to be writing this from back at home. Blood tests, an ECG, a chest X-ray and other tests all seem to indicate that I'm recovering from the mini-stroke and that I can continue the treatment (aspirin) at home whilst attending an outpatient clinic.

 

We don't know what caused the mini-stroke, I'm lacking the common risk factors so it is almost certainly related to the cancer or its treatment. I'm still due to see my oncologist in just under two weeks time to discuss my next treatment option though this may be influenced in part by this recent issue.

 

I'm extremely pleased to be home and am looking forward to a good night's sleep!

 

 

  

Jumping the gun

Yesterday I posted about the strange problem I had early in the morning, I noted that my oncologist didn't think it was anything neurological and that I was pleased about that. It turns out I was jumping the gun! I had a routine appointment with my GP this morning, while I was waiting to see him I was asked to complete a survey about the practice, it was then that I discovered that I was unable to write properly. My GP thought that there was a good chance I had a neurological problem. To cut a long story short I've since had a brain MRI which showed that I've had a small stroke. I'm writing this from the stroke unit at the Bristol Royal Infirmary where I will be at least until Monday. I'm taking aspirin to ensure any clots in my blood are dissolved and I will be kept under close observation. 

I am feeling pretty well with just a heavy feeling in my head and some lack of coordination, but nothing major. I'm glad we know what actually happened yesterday as it was a worry not knowing what had caused my problems.

That's all for now but I will post again when I have something more to report.

Happy new year

Katie and I spent New Year's eve alone with a very good bottle of Champagne and a delicious Thai meal that we cooked together. Well, what really happened is that I made the sauce for the three flavoured fish while Katie deep fried the spring rolls, made the laab salad, cooked the fish, the rice and prepared several of the ingredients for me to use. I did open the Champagne and eat most of the dishes so I pulled my weight in the end!

 

The enjoyment of New Year's eve didn't last long into 2014. This morning I woke up at 6:30am with the room spinning, I also had a headache and a strong feeling of nausea. My brain seemed to be disconnected from my arms and legs and Katie had to half carry me to the bathroom so I could throw up. After about 15 minutes the nausea and the spinning subsided and I fell back to sleep until around 9am. As luck would have it I had an appointment with my oncologist today. He thinks the symptoms I experienced could be down to problems with my blood pressure, with my blood sugar level or with the level of various salts in my blood. I was concerned that it was neurological in origin but he doesn't think it is and I'm relieved about that. I've had a blood test so that may tell more soon. My oncologist advised that we call an ambulance if it happens again, especially if I don't make a rapid recovery as I did this time.

 

The primary purpose of meeting with the oncologist was to talk about treatment options. I'm feeling positive about the consultation as it is clear that he's willing to consider some less orthodox options as the more conventional routes become increasingly thin on the ground.

 

The plan we agreed is that my next treatment will be pazopanib assuming my cardiologist agrees that the risk of heart complications is acceptable. If pazopanib is a 'no go' then sorafenib, a similar type of drug, is the next option but again this depends on the cardiologist's opinion. If sorafenib also poses too many risks we'll try a standard chemotherapy agent (probably dacarbazine) in conjunction with metformin. My oncologist has consulted with Prof. Judson at the Royal Marsden about my case, he's recognised as the UK's top expert in LMS so I'm happy that we've done what we can to make a good choice of treatment in what is a very limited position.

 

I will see my oncologist again in two weeks and I hope to restart treatment as soon as possible after that meeting.

 

***

 

I think a photo is definitely called for at the end of this post. I've just started reading Donna Tartt's latest book 'Goldfinch' which is all the excuse I need to post this:

 

 

Happy new year to you and let's hope that the 2014 brings many bright days to us all.