This morning while driving to Melbourne I knew in my mind that I did not want to continue with this chemotherapy regime! Cisplatin (this is my third time in 10 years of having this heavy metal drug) I know, is becoming toxic in my system and both times that I have had it since August 2013 I feel absolutely terrible like I am going to just curl up and die, the pain is unbearable, my weakness is awful and there is just no way of getting thru it for the 10 days after receiving it overnight in hospital as it has to be flushed through my body for 24 hours as it can be very damaging to all the organs.
I told Keith my news and I think it really threw him for a sixer! As I just sprung it on him! He knows that without having chemotherapy my chances of quality and quantity survival are minimal and went into slight shock mode! However he did say that he would support my decision whatever I wanted. I did say to Allan that I was good and wanted to discuss the scan and treatment with him. He smiled and said 'of course Louise, I am sure you do!'
A wait in my oncologist (Allan Zimet) waiting room was only about 20 minutes. Allan looked at me when we were called in to his office, he said how was I and that he felt (as did Keith too) that I am looking better now than the start of August when I commenced chemotherapy (cisplatin/gemcidibine) after a three year break (cisplatin/alimta). We looked at the scan together comparing the previous one. No significant changes - including no further fluid. He did say that a pet scan in 2 months will be better to compare with this CT scan. I did say to Allan that I was good and wanted to discuss the scan and
treatment with him. He smiled and said 'of course Louise, I am sure you
do!'
I explained about the cisplatin and the feeling that I was like death warmed up when having it and I felt that my system is too toxic after 10 yrs of it. I said that I don't want anymore chemo and what did he think of this choice! He said 'well without the chemo my chances of quality and quantity survival will be minimal'.
He is switching over to carboplatin/gemcidibine combination. We discussed this and both agreed that cisplatin is the more stronger drug that is given to younger and fit patients that can tolerate it. Carboplatin to more older patients who would not be able to tolerate the cisplatin. The cisplatin has been able to in the past given me quality and quantity for 5 years then 2 to 3 years.
So a week off (my immune system will keep on getting stronger), day chemo next Wednesday (carboplatin/gemcidibine) that will take about 5 hours and no overnight hospital stays anymore! I then will return in 8 days for a further dose of gemcidibine.
I am not really happy with staying on the chemo however for the moment NO CHOICE if I want to stay well, have quality and hopefully quantity of life)! Allan said his aim for me at the moment is to be around in March/April 2014 to accept my award in America!
I did ask Allan if I were to cease treatment would he still support/look after me when I needed it. His answer was 'of course'!
I think our health system here in Australia is by far excellent for treatment of mesothelioma - if you shop around and find an oncologist/general doctor/ who has had experience with mesothelioma and long term survivors of this deadly cancer. When I first went to see Allan 10 years ago, I asked him if he had had experience with mesothelioma and if any long term survivors - his answer was 2 x eight years and 1 x 5 year survivor. (One went on to live for 12 years with good quality of life). Same with my local doctor - I asked him the same and he said 'a few he has treated with mesothelioma and a couple of patients lasted 2 years'. I was happy with his answer as at least if I needed pain medication then he would be able to know what to give me without having to guess!
There is no easy answer for mesothelioma and treatment. It is still no cure or closer to finding one. However I do believe that over the years palliative treatment has improved although our bodies seem to be getting immune to the treatments.
Globally researchers need to find a cure/they need to help us longer term survivors stay alive and well too, not just give up on us because 'we are past our used by date'!
On another note, my heart goes out to those with mesothelioma that are doing it tough at the moment. Hang in there, get help and you will get thru this!
On a lighter note, when we arrived home our siamese cat, Charlie had left a present for us - a dead baby rabbit sleeping peacefully!
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