So far, so good with the chemo

I had my first infusion of the new course of chemotherapy last Wednesday, the process went without any hitches and in general I've been pleased with the way that I've been feeling. I'm experiencing some fluid retention but this seems to have stabilised in the last couple of days and I'm hoping it may start to decrease ahead of my next infusion on Wednesday. It's early in the first cycle of treatment however and I know that I might not be this lucky in the next week and that in my previous treatment with these drugs I experienced more significant issues as the cycles went on.

 

My main problem at present relates to my mobility. I'm now finding that I'm sometimes unable to walk more than two or three hundred yards before I develop severe discomfort and some pain in my chest, tummy and lower abdomen. On a good day I might do better than this but good days seems to be rarer than they were a month ago. I'm considering how I can best prevent this problem from stopping me from getting out and about, I have a feeling I'll be writing about test driving a mobility scooter soon!

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There's a very good bill that is currently seeking to pass into law that was in the news last week, it's the 'Medical Innovation Bill' and is designed to allow doctors to prescribe unlicensed drugs to cancer patients for whom existing treatments have failed. Whilst there are a number of genuine concerns about the safety of such drugs, the tolerance for risk amongst patients with a deadly disease and no licensed treatment options available to them is much higher than amongst 'normal' patient groups.

 

I've had some recent experience closely related to the issue the bill seeks to address. There is a treatment I'd like to consider in the future which is not approved for use in my cancer. Even though this treatment involves using drugs that have been safely taken by large numbers of patients with different cancers and conditions my oncologist explained that it would be difficult for him to prescribe as it hasn't been tested in Leiomyosarcoma or in the drug combination I'm interested in trying. The frustrating thing here from my point of view is that if I were denied access to this treatment then I'm not aware of any alternative option that I'd be willing to try.

I would very much like to see this bill passed by parliament as it will address a need that is felt by many people with advanced cancer. You can read the BBC story on the bill from last week here or the very short text of the bill itself here.

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A few weeks ago we visited Canterbury. I've always enjoyed visiting cathedrals and attempting to take photo's of their interiors so I was keen to spend some time at Canterbury's. Here are a few photo's (click or double click to see larger versions):

 

'Truthloader' YouTube interview

I was recently interviewed by Truthloader, an internet based subsidiary of ITN. They wanted me to talk about my experiences with my cancer and about my support for assisted dying. You can view the video at this link.

 

The quality of the video isn't great as we recorded this via Skype over our broadband connection which we've been having some issues with lately.

New chemo treatment begins tomorrow

I'm starting my next course of treatment tomorrow with my first infusion of gemcitabine. I'm pleased that the oncology centre has managed to schedule this so soon as I'm keen to make a start. This will let me evaluate the level of side effects and get the drugs to the growing tumours as soon as possible.

 

A couple of weeks ago I was finding it difficult to accept gem/tax as something I was willing to take. Intellectually I could see that it was the treatment option for which the best case could be made but emotionally the thought of taking it with all the attendant side effects was causing me real anxiety and concern. Once I got the confirmation that the scan reports showed that the cancer was growing again the way I feel about this treatment changed dramatically. I'm now even more convinced that it's the right option for me and I'm feeling much more positive about giving it a try. Psychologically I feel like I'm in a much better place to be starting the treatment than I was just a week and a half ago.

 

Assuming the infusion goes ahead tomorrow I probably won't post an update until Sunday or Monday, that will give me time to understand something of the side effects across the first few days of the cycle. I will be due to have the second infusion, consisting of both gemcitabine and docetaxal, on Wednesday next week.

 

 



Another roll of the dice

My oncologist called me yesterday afternoon and gave me the results of the scans I had two weeks ago. The good news is that the brain scan showed no change. We'd had some concerns that it might show something more sinister as I've been somewhat unsteady on my feet for a few weeks now and we weren't sure if this was caused by a brain problem or by the muscle wastage I've been experiencing as a result of taking steroids. The bad news is that the scan of my torso confirmed that the cancer is growing in my liver and in my abdomen. There are also some additional tumours showing in my lungs. It's clear that my most recent treatment, cyclophosphamide, has ceased to be effective.

 

Waiting for the scan results has given us time to agree a clear plan for my next treatment. I will start on a combination of two well established chemotherapy agents, gemcitabine and docetaxel (gem/tax for short). As mentioned in my previous blog post I had six cycles of gem/tax back in 2011 and have concerns about whether or not I will be able to tolerate the side effects this time around. I'm now waiting for an appointment for the first session. 

 

My oncologist proposes that I have three treatment cycles before having another scan to determine how effective the drugs are being. If there are no delays this scan will take place around eleven weeks after I have my first infusion. In the meantime my oncologist thinks we will be able to get a good idea as to whether the treatment is working by monitoring my liver function. My general health should also provide an indication however it is very difficult to separate problems caused by the cancer from chemo drug side effects.

 

If the new treatment doesn't work there's a high chance that I won't be able to have any further treatment afterwards. The majority of systemic anti-cancer drugs require the patient have a sufficient level of liver function, it is very questionable whether my liver function would meet that requirement; there's a chance then that this could be my last roll of the dice.

 

I plan to focus now on what I can do to enjoy life during the treatment. I've got a number of books I'm looking forward to reading and I'm regressing to a younger version of myself by playing a football management simulation game on my iPad (I was completely addicted to this game on my PC about twenty years ago). These might not sound too exciting but if I'm only feeling well enough to sit on the sofa they're an attractive alternative to daytime TV! I'm really hoping that I'll remain fit enough to get out and about, we still have a lot of new restaurants in Bath to try and, on the photographic front, I have ambitions to visit Stourhead for the autumn colours, Gigrin Farm to photograph red kites and, later in the year, Slimbridge to photograph the visiting Bewick's swans.

 

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A month or so ago I went along to Bath races to take some photo's of the action. I'm not really interested in horse racing but the horses look very impressive running at full speed for the line. Here are three of my favourites (click/double click the images to view larger versions).

 

 

 

An interim update

When Katie and I met my oncologist yesterday we were expecting to get the results from my latest CT scans, unfortunately the consultant radiologist has not yet written the scan reports so we'll have to wait a few more days. We've only experienced delays like this once before but given how vital scan results are to people in my situation I do think this is twice too often.

 

In the absence of an expert radiological opinion my oncologist has taken a look at the scans and feels that they show the cancer progressing. This view is consistent with both the symptoms that I've been experiencing and with a decline in my liver function that  my recent blood tests indicate. Assuming my oncologist's interpretation of the scans is confirmed I will have to move to a new treatment.

 

We've agreed that the treatment most likely to benefit me is a course of chemotherapy using the combination of drugs gemcitabine and docetaxel. This would be a repeat of the first chemotherapy regime I had following my diagnosis back in April 2011. The drugs caused the cancer to shrink slightly and then halted any growth for several months. I only had six cycles before switching to another drug and there was no indication that my cancer had begun to develop immunity to gemcitabine/docetaxel during the short time I was using it. This gives us hope that the treatment will shrink or stop the growth of the disease for a while.   

 

Unfortunately gemcitabine/docetaxel is the chemotherapy regime that has caused me the most problematic side effects. I had extensive fluid retention that got progressively worse with each cycle and I was reduced to spending most of my time sitting with my feet up on the sofa. For those who have never experienced it, fluid retention may sound like an inconvenience rather than a serious problem, however it can be very uncomfortable and if the fluid is retained around the chest it can contribute to heart failure. I've already had some issues with heart failure back in 2013 so I may be prone to it. In addition to fluid retention I also had a wide range of additional side effects including reductions in the strength of my immune system, constipation, nausea, muscle weakness and flu like symptoms. Not surprisingly I'm finding the prospect of this treatment  rather grim and am currently looking hard to find some enthusiasm for progressing with it!  

 

We haven't taken any definite decisions at this stage as we need the radiology reports and my oncologist also has to confirm that my liver function is within the parameters permitted for receiving these drugs. We should have this information and a confirmed way ahead next week and I'll post a further update then.

 

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I'll end with some colour, I photographed these flowers in the wild flower field at Hartley Farm in Winsley, near Bath (click or double click for larger versions).