A trip to Northumberland

This morning I had my second dacarbazine chemotherapy treatment. As mentioned in my earlier post, we have increased the dose by 25% compared to the first cycle. The new dose is typical for use in patients with sarcoma, I initially had a lower dose so that we could understand the level of side effects that I would experience. In fact the first cycle of dacarbazine has been the most trouble free chemotherapy cycle I've ever had, I'm expecting that this second cycle will be a little more problematic as a result of the higher dose but I'll just have to see how it goes over the next few weeks.

 

I keep a count of my chemotherapy cycles, this current one is the 30th that I've had since starting treatment for Leiomyosarcoma back in April 2011. Some people with advanced LMS are rather sceptical about the benefits of chemotherapy, especially in light of the very severe side effects that people may suffer. My own experience has been a positive one: not only have the side effects been generally manageable, the treatment itself has, in my view, significantly extended my life. Of course this is just my impression and, from a scientific perspective, is merely an anecdote but it does mean that I'm personally very comfortable with the treatment path that my oncologist has been recommending to me and that I have chosen to follow since my diagnosis. There is a relatively low chance that the dacarbazine will actually do me any good, but even if my next scan shows that it hasn't worked that won't change my view on the value of chemotherapy for those with advanced LMS.

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Katie and I recently made a three night trip to Northumberland. Given the windy and rainy weather that has been with us for weeks we really did wonder if this was a good idea, however we decided to take a chance and go anyway. As luck would have it our two days of bird watching on the Northumberland coast coincided with a real improvement in the weather and we enjoyed a lot of sunshine during our trip.

 

We spent some time sat in a hide over looking the Island of Lindisfarne. The sea was a shade of turquoise more usually associated with the Mediterranean than the north coast of Northumberland in February, the vegetation was golden and the sky blue.  It was very relaxing just being there enjoying the view.

 

We hired a local wildlife guide to take us out on the first day of our visit. We've used him once before back in 2009 and we had another very good day this time around. Whilst Katie and I are reasonably good at identifying birds we would miss quite a lot without the help of a guide. The guide has written a blog entry on our trip for anyone interested in the details.

 

I didn't take any pictures so I've picked this from one of our previous visits to the area. This is a shag, a relative of the more common cormorant. I think this bird is really very stylish with striking green eyes, yellow on the bill and an iridescent green sheen in the plumage.

 

 

 

During our trip we stayed at the Red Lion at Alnmouth, a very nice traditional pub that we've also stayed at on our two previous trips to the area. I recommend it if you're looking to visit. 

  

Side effects, what side effects?

I'm due to have my second cycle of dacarbazine chemotherapy next week so I had my routine pre-treatment appointment with my oncologist on Thursday. Overall I've found the first cycle with this new drug to be the best I've experienced in terms of side effects - basically there haven't been any. This is pretty unusual and I've found myself wondering if the saline mixture I was infused with actually contained any dacarbazine! My oncologist was quick to remind me that I shouldn't assume the next cycle will be so trouble free.

 

We've decided to increase the dose of dacarbazine by 25% next week. I'm expecting some side effects but I'm hoping they will be quite mild given the experience from last cycle.

 

The oncologist gave me a copy of the radiology report from the CT scan that I had back on the 30th January. The purpose of the scan was to provide a baseline on tumour size that we will use to compare with my next scan, due in around five weeks time, which will be used to determine if the chemotherapy is working. I'd been off treatment for around eight weeks before the 30th January scan, during that time we knew that the cancer was growing and this was confirmed by the scan results. The tumours in my lungs, liver and abdomen had all increased in size. The good news is that the radiologist didn't raise any urgent concerns regarding this growth and he also didn't identity any new tumours elsewhere in my body.

 

My health has been generally good over the last three weeks although I have been getting more symptoms from the cancer since I stopped taking steroids a week ago. The most significant of these are constipation and stomach/abdominal pain. The pain is easy to manage as it tends to be transient in nature and responds quickly to paracetamol. The specialist nurse from our local hospice had warned me to expect additional symptoms once I discontinued the steroids, this is because the steroids suppress the inflammation that the tumours cause and without them this increases causing pressure on other organs.

 

My oncologist also asked me to continue to refrain from driving until he has spoken to a lymphoma consultant colleague of his. He said that he thinks it likely that I will not be judged safe to drive.

 

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Not being able to drive is going to be a bit limiting in terms of my wildlife photography. Katie is happy to drive me to places but I like to spend a lot of time taking my shots and sitting around watching isn't much fun for her. One of the great things about photography is that a constraint on what or how you can shoot can sometimes help you to be more creative. Here are a few shots from February that were all taken within a mile walk of our house. Hopefully I'll find lots more subjects in the coming months.

 



 

 

 

 

 

 

Seeing the funny side

It's been over a week since I received my first chemotherapy treatment with dacarbazine and I'm really surprised and pleased with how well I've been feeling. I've had fewer side effects so far in this cycle than with any of the previous treatments. My oncologist gave me a lower dose of dacarbazine than would ordinarily be used as he wanted to see what problems it might cause me, I would guess that next cycle we'll be upping the dose to the normal level. This may result in more side effects but given how well this cycle has gone I'm hopeful that they won't be a major problem.

 

We don't know if the treatment is having a positive impact on the tumours. I have several small sub-cutaneous metastases that are visible on the surface of my skin. I've been watching these closely to see if they show any sign of shrinkage but I've not been able to detect any. It's quite possible that the tumours in my liver, abdomen and lungs will respond differently to those on my skin so this does not mean the drug is not working. I'll have to wait until after the next two cycles in order to get a CT scan to definitively determine if there has been a positive response.

 

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Iain Banks, the Scottish author who died last June of gall bladder cancer, remarked that he and his partner found "ghoulish humour" to be a useful part of their strategy for coping with  a terminal prognosis. In the public statement issued on receiving his diagnosis, Banks wrote:

"I've asked my partner Adele if she will do me the honour of becoming my widow (sorry - but we find ghoulish humour helps)."

 

Katie and I have also come to find this type of humour to be useful. Some people will consider it to be in bad taste, but sometimes there is very little that is as effective at changing a mood or closing out a discussion on a difficult or depressing topic than a really good piece of black humour. I emphasise here that I'm referring to making these kind of jokes about my own condition - not about other peoples, clearly that is something else entirely.

 

Here are a couple of examples that stick in my mind, I hope you see the funny side!

 

In September 2011 Katie and I were at the cinema watching the trailers for forthcoming films. The film being advertised was "The Iron Lady", the biopic of Margaret Thatcher. I've always found Thatcher to be an interesting character which is in total contrast to Katie who really had no time for her at all, our conversation went something like this:

 

Paul: "Let's come and see this film, it looks really interesting".

Katie: "It's not out until February, hopefully you'll be dead by then".

 

(We never did go and see the film!).

 

Then there is the birthday card I bought for Katie last year, it featured the following cartoon which seemed extremely apt given the love of wine both Katie and I share.

 

 

 

 



Back on treatmemt

I'm now back on treatment having just had my first infusion of dacarbazine. The drug is delivered through an hour long intravenous drip. The main side effect is nausea although the full range of typical chemo issues are possible. From previous experience I know that I need to wait a week or so to have a good view on my own reaction but for now I'm feeling fine.

 

I got the results of the brain MRI that I had last week. Compared to the previous scan they indicate a significant improvement. My oncologist's view is that this is very positive and that it is also compatible with the cause of the abnormalities being a Lymphoma. I will continue to take steroids for the next ten days or so and will have another brain scan at some point in the future to see if there has been any further change. In the meantime I've been told that I should continue not to drive until my oncologist has had chance to discuss my case with one of his colleagues, hopefully I'll get more information on what they decide soon.

 

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Having a break from chemotherapy has been very welcome. Katie and I have been able to take several shorts trips away which, despite the recent weather, have all been very enjoyable. Last week we were down in Padstow for a couple of nights with friends. This was one occasion when the unsettled weather actually added something to the experience. The sea provided an entertaining display for us with the surf crashing in and breaking in spouts over the rocks. This made a great subject for a photograph or two (click the images to view at larger size).