Sunday, 15 December 2013

Potential next steps

I'm still not sure what my next course of treatment will be. I've started a new daily tablet for my high blood pressure, spironolactone. The hope is that this drug will help reduce my blood pressure to a level at which it might be safe for me to use pazopanib. I'm also waiting to hear back from my oncologist who is seeking a view from my cardiologist on the suitability of pazopanib given my existing heart problems.
If pazopanib is deemed unsuitable then there are various other options to be considered.
My oncologist has consulted with a colleague of his at the Royal Marsden hospital in London. The doctor from the Marsden has recommended dacarbazine. Dacarbazine has been used to treat sarcoma for quite a number of years so I expected that there would be a good a number of phase II and III trial reports available on the use of this drug in LMS, it seems I was wrong however. So far I've only been able to find results from a single trial of this drug. In that trial only around 25% of patients treated got benefit (shrinkage of their tumours or disease stability). The trial doesn't indicate how many of these patients had LMS rather than other forms of sarcoma. I've also been looking into whether this drug might be more or less likely to work for me because of the rare genetic mutation I carry (Li-Fraumeni Syndrome). From what I've read so far it seems like the drug may not function correctly in people with this genetic problem. So far then I'm really not convinced by this option.
Another potential treatment option is sorafenib. Sorafenib is a drug that works in a similar way to pazopanib but which may be easier on my heart and blood pressure. The problem with sorafenib is that there is very little research on its use in LMS. There are a couple of phase II trials but these involved low numbers of LMS patients though they both showed that sorafenib provided disease stability in around 50% of the LMS patients treated.
The final option that I'm aware of at this point would be to try the very first chemotherapy regime I had again. This was a combination of gemcitabine and docetaxal. It worked for me so it is possible that it might work again. It did have some challenging side effects though, most notably lots of fluid retention in my feet, arms and legs and muscle weakness in my legs and arms too. These side effects limited my mobility quite a lot though they weren't overly uncomfortable as long as I spent most of my time on the sofa!
I'm seeing my oncologist on the 2nd January and we should be able to make a decision on the way forward then.
In the meantime we're all set for Christmas. I'm really looking forward to spending the festive season without any chemo induced side effects!
A number of people have mentioned that they enjoyed the two photo's that I recently posted from my afternoon spent as a sports photographer at the Bath vs. Exeter LV Cup match. Here are a couple of my favourites from that match.


The first of these shots shows Bath hooker Ross Batty flattening an Exeter player who had the nerve to try  and tackle him, the second shows Bath's fly-half, George  Ford, kicking for goal.


  1. Hello Paul,
    I am an LMS survivor since 2005.
    I'm Frenchy, so I have some difficulty to understand how to post on the US LMS survivors forum... Just saw your last post about DTIC.
    I'm on my 4th infusion. Scanner after the second one roun showed stability in my lungs mets.
    Pbs with platelets, neutros and hemoglobine, so last time I had 66% of the initial dosis. I'm on 13th day, and waiting to see how it will be this time...
    Very few people in US has DtIC in monotherapy. Maybe more in Europ ?
    Next possibility for me would be Votrient (pazopanib).
    If you need some information, I'll be glad to help you !

    1. Hi Anne,

      Many thanks for taking the time to share information regarding your experience of DTIC. It is very useful to know how others are finding this treatment. I hope that the treatment goes well for you and I wish you a very good Christmas.