Monday, 21 November 2011

Mesothelioma and sugar craving

Today I met a new oncologist and he is quite refreshing, he says he will be my advocater and help guide me to stay alive.  Unfortunately for both parties that is not exactly an easy job.  All doc's can do is quote proven treatments and for me that is Alimta, which I just can't do.  We discussed radiotherapy, cyberknife and ablation.  I can understand that statistics can't be proven to show that any of the three can help towards long levity and really can only be done for palliative care, and under the NHS it really has to be proven for palliative care before you can have the treatments. 

The quandary of a meso sufferer is how do we prove that such a treatment unproven can become proven if they aren't carried out?  You all know that I believe debulking is helping towards keeping the cancer back by having the larger tumours removed by ablation or direct radiotherapy.  If the dead cells travel through our blood our immune system can help pick up the code and prevent a little bit of growth for a while, but this isn't totally proven, therefore it isn't used as prevention.

I have been getting tired of late and eating fruit gums and midget gems as if there is no tomorrow, even planets and choc biscuits have been added to my list.  Today I read an article given from Lisa which says that cancer thrives on glucose 10 times more than the rest of our cells, could this be what is causing my addiction to sweet things?  As for the tiredness that is part of the meso affecting my cells, infact much of what he says I could match outright over the last few years.  Weight loss, sweats, cold, tiredness, loss of appetite, food tasting different, to name but a few. 

We had a look at the scan on screen and I have some abnormalities in the nodes under my arm, I knew really because my chinaman has returned, although at present he isn't using his blunt axe.  The three in my right lung are so small but there is a nice large one waiting for the picking in my left.  He also pointed out the nodule that is my 3rd Boob and it does look like its attached to the muscle.  I doubt Dr Owens will be wanting to remove it when I see him.  I could do with some treatment to it though because it does cause a lot of grief, especially the erupting volcano pains it gives.

On a high note he is quite willing to put me forward for Phase I and Phase II trials and is writing to our local cancer research unit to see if there is anything on going, together with that he will read the ADAMS trial and if he thinks I am suitable will put me forward. 

I said the usual, I am not ready to give in and I asked the question we don't want to hear the answer to, how long.  It is hard to say how long because the average is 12 months but then none of us have been average have we?  He would hope I would still be here this time next year - but there again we all know how fast the growth pattern of this cancer can change.

I wish we could take a razor blade again and just go around my lung and peel off the new growth, it will never happen nor could it. I also learnt something new today, he showed me the patch of air and fluid that remains in my lung area so when I get the scan copy I will put a pic of it up!

Yesterday we found a lump on lexi just under her last nipple so neither of us slept well last night with worry. Thursday can't come soon enough for her operation, I wouldn't care but we check her bum twice daily so I don't know how I missed it!  Poor Lexi, she has been biting her fur again too, this time on her thighs - she is back in the wars!

On that cheery note I think I will sign off.

Let's start proving that we do live past 12 months and get those stats lifted!

1 comment:

amanda said...

Hi Jan

Ray also still has a small patch of fluid left, we get our scan update this week so keeping our fingers crossed for everyone