Friday, 18 February 2011

No right or wrong way with Mesothelioma

Strange how when faced with the dilemma of what to do before didn't seem as bad as this time around, maybe because I always knew there was surgery in the back ground, but now after having surgery and a break of 2 years that door has certainly closed.  Shame we can't just go back in and cut the blasted stuff away but then, as proven time and time again, mesothelioma just doesn't give up!  Apparently I am one of the longest living up here with this disease, I know a fair few who are still going well around the country and up here, but again this disease doesn't run as statistics say.  Our ages need to be taken into consideration, when it started and what age, etc etc.  A national database would be helpful for us all to query who had what and when.

Yesterday was a fact finding day at Manchester with oncologist Paul Taylor.  I will say what a beautiful cancer lounge they have, very relaxing looking out into gardens.   I nearly had a heart attack when they took me to the lounge I found myself saying I think you have the wrong person, but they only wanted my blood. 

An open and honest person is what I like and that is what I got although current options is what we are looking for and the golden bullet Alimta was the first on the list, followed by two other chemos.  No trials at present in Manchester but that's not to say there aren't any in other places.  We discussed radiotherapy, but that is mainly used for palliative care.  We did ask the question of why can't the tumours be blasted to debulk but the answer always seem to be the same, it's not used on meso patients for that.  To my mind debulking what you have means less cancer spreading so slowing down the growth rate.

Today was my visit with my Chest man, Dr Abbassi.  I found out that I don't have an MDT team which in one way means I can do what I want to some extent, like finding out who is willing to do what and maybe picking my own treatments but the otherside of this is that no one is really monitoring me....nothing new there then.  I am a wild card but still need a good ear and reasoning to help me out.  He did tell me that the radiologist and himself were available to me at any time.

My next port of call will be my old oncologist Dr Hughes, Paul Taylor was going to write to him with his thoughts and any options, as will Dr Abbassi. 

Dr Abtin has come back with a quick reply,  he is having trouble getting the scan to load on their system.  He seems to think he can get a couple of the tumours, which will halt their growth.  One thing I have learnt is that too much radiotherapy now can reduce its effectiveness later, at least cryo isn't in that vein so therefore can be used several times.  Paul Taylor didn't rule out cryo either.

So here I am thinking all those new pains in my back and side, heaviness of heart, more breathless was down to my body coming back to life after surgery .. oh I wish.  I also wish I wasn't as in tune with my body as I am but then in many ways it has kept me alive, I kind of knew it was back because my neck keeps getting a slight stiffness together with my chinaman back in my left armpit, thankfully he hasn't started using his blunt axe yet!  My hair has started coming out more in the shower, and my finger nails have been splitting, all symptoms of my previous meso history.  Have also started getting those rotten headaches back, although at the moment this could be down to over thinking.  I have to remember you can live with meso growing and still have a life, have done it before but I don't seem to be able to find that energy or more importantly that outlook.  Also I am still a person and can have other things wrong apart from cancer.

The pain some of us suffer is unbearable at times but I would still prefer to be alive with pain than dead, it does affect the quality of our life but for me at least after 2 hours on a morning I do start feeling better.  I would like to wake up feeling normal one day!

So my future plans, if Dr Abtin comes back with a yes I can do them for certain then I will be off to LA for a couple of weeks, (that's another thing I hate leaving the dogs! I am certainly becoming a home bod) then maybe start a round of chemo, but which chemo?  I am hoping Alan gets good results on his vinorelbine.  I also understand this comes in capsules - get in no needles.  Dr Abtin also wants me to meet with a specialist at UCLA.  Just wish I could have cryo in England but Dr Abtin carry it out.

Meanwhile hubby has been looking into some radiotherapy but that doesn't seem to be leading anywhere at present.   There is also the cyberknife, but still haven't heard of anyone who has tried it, not that I mind being the first but sometimes it's best to stick to what you know.

On that note I will close this entry, once I have spoken to Dr Abtin on Monday I will know for sure my first step.  I know that Andy and John probably won't agree but if this does work maybe it will show that it can help others who are in this same position.  We know there isn't a cure, but if some of the tumours are removed hopefully some of the new pain will cease (like it did on my kidney 3 years ago), also debulking the sticky out tumours just leaves the thickening for the chemo to shrink.  Just a layman's view on things.

Keep strong meso warriors, we are all battling together and hopefully all trying different ways to help others.


1 comment:

Anonymous said...

Hi Jan

Would the cyberknife or tomotherapy not be able to zap the tumours?

Good luck.