Tuesday, 11 June 2013

The normal 'ATypical' and Out of Evidence Zone

Yesterday some 8 weeks after my scan I saw my oncologist.  I wish they would read what they say before seeing us again sometimes as I always feel like I am starting from square one in some areas.
Ok, the results are mixed, I have meso back around the pericardium, not the 7mm growth right around which the chemo knocked out, but it has regrown, so those slight heavy pains I have had recently tie in. Thank God though no fluid has collected their, although I have two lots of fluid areas in my chest now.
I have a couple of large tumours that have changed together with some new nodules and lymph nodes, while others have remained static.  My right lung has undergone changes, the mesothelioma in their has decided to grow again, although only slightly, but growing. 
Some of these growths would be ideal to have done with cryoablation because they are singular long tumours but it isn't a practise we have in this country so they will just keep growing.  I asked about the size of the thickening at the bottom of the lung but as he was going to measure it he found another lump so diverted the conversation, leaving me without an answer.
Treatment, well it was the 'you are in a Evidence Free Zone, no one has had your length of time with the treatments you have had.'  Together with having 'ATypical' mesothelioma.  He said that trying again with Alimta wasn't a good idea, at 50% I had a reaction and if he went any higher he would kill me.  I told him I thought it was the platins, but he then said because I have had Alimta 3 times it wouldn't make any difference as it hasn't held back the old stuff?  Confused - me too. 
I suggested trying Gemcitabine, as Mavis is trying this, he said he wasn't able to give this unless he had further backing.  He said last time he was going to discuss my case with J Steele so I reminded him.  He may get round to it over the next four months.
I then said I wouldn't be interested in treatment until at least September at the earliest, although I would hope it was September 14 not this year, unless I took a dramatic turn for the worst.  I said it would be better if they infused me again the time the mesothelioma was growing.  He struggled to get to grips with this, but after explaining several times that the last chemo worked because he infused when I knew my meso was growing and if we did it again when the same process was happening we would get good results.  In fact he is still amazed at how well my mesothelioma responded.
So a mixed bag, but if I am in the Evidence Free Zone then surely this is the time to see what happens.  I honestly believe a better system would be if rare (I say that tongue in cheek) cancers  have a couple of specialists around the country then our own oncologists work under them for these types.  All info could be gathered in one place but we would never need to travel to another hospital for treatments.
Say if J Steele became chief Meso Onco - all evidence and patients file's were sent to him, maybe we all even consulted with him once.  Then when the standard treatment didn't work he had all other facts before him.  Hubby said this would add to his case load but lets think about it rationally, he sees nearly everyone after a certain point in treatment as we all end up going there asking his opinion at one time or another.
Then our own oncologists have someone else to fall back on when we become Zone Free.  Ever since 2009 I have been called this, no one else in the UK has undergone so many treatments as me (so I keep being told) and for my own advocacy I am still here today. 
Maybe I am one of the only people who know when my meso is taking a growth pattern, I don't know.  But surely others who have this cancer go through those Adrenalin rushes, temperature drops and pains that come for a few days then go again until 8 or 9 weeks later when they come back.  It may not be as long as my gaps, they could be monthly, but I do believe meso grows in starts and stops, it sprouts like a weed, sending its nasty seeds every so often out onto new clean tissue.
My MRI wasn't reported on but the Onco said it was better to stay off any physio until they were sure the meso wasn't involved.  He would chase the report up. funnily enough, well not funny really, my back is feeling much better, just need my leg to stop this White Noise pain.
So for me no real surprise as I knew the meso had movement, just wish it would have stayed off the pericardium.  I don't like those heavy heart pains one bit.
We are all still in shock over Debbie and as the community on face book mourns her passing it has reminded many of us we have no guarantee on how long we have.  We have to fight our battle as best we can and hope that we have the right doctors behind us to ensure we get the best chance possible.
To my fellow bloggers and mesothelioma patients keep well, keep focused on living, until the next time ......

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