Well it's been one hell of a summer! - not the same one for me as most of you have had.
I haven't actually seen any of it although I have felt how warm it has been. I started the 4 rounds of chemo (cisplatin/pemetrexed) at the beginning of June and finished it 2 weeks ago, and now summer has gone. I haven't been out and worn any of my summer clothes, my summer sandals bought in readiness remain unworn.
But.....I have finished chemo, what I can only describe as hell on earth, not something I would wish on anyone. When I say finished I mean finished (for now anyway) no maintenance to follow.
I have been extremely sick as the anti emetics didn't work and have literally felt like I was dying. I think emotionally it has also hit me how poorly I actually am. Because the Iressa (the targeted chemo tablet I had for the last 2 years) worked so well I sort of blocked it out of my mind that I was poorly and had a relatively 'normal' couple of years. This however has bought through all the emotions I probably should have felt when I was first diagnosed. I am seriously ill........I am dying......
I got the scan results this week.....I don't know what I was expecting....what I hoped for was to hear that the chemo had destroyed the cancer and there was no longer any left. I didn't get that.....I was told though that that never would have happened because of the Iressa. The first scan during these 4 cycles of chemo had showed 3mm shrinkage, which they said was good. This time no change, which they also said was good. (I have to believe that they are telling me the truth as it didn't feel like it was good news?!?). I really wanted to ask for a break of a couple of weeks before I started the maintenance chemo as I only really had 2 days that felt 'normal' between the last 2 treatments and I craved a bit more. I also hate the way the steroids have made me look, I have gained 6kg in weight! and have the typical big round 'Moon' face. I don't look like me :(. I was getting very depressed with it.
So what are my options? 1/ I could have the maintenance chemo (pemetrexed on its own) 20 min infusion every 3 weeks- would still have to take the steroids though. Or.......not have anything and have a break from all treatment, after all I have been on permanent chemo for the last 2 1/2 years!
Apparently the difference in progression free survival is only 1-2 months, which means that it would only be 1-2 months extra time I would get being on the 3 weekly maintenance chemo before the cancer starts growing again, compared to if I just have nothing as at the moment my cancer is classed as 'stable' (That's why the scan was classed as being good, my disease is stable).
So I have opted to have the break! I really want some normality back and I want to lose the steroid 'moon' face! And have some 'normality' for a while :). I am also told that the longer I can survive as 'stable' the better my chances of staying stable are. So If I am still stable at 3 months, the chances of reaching 6 months are high and so on. I will get a CT scan every 3 months or sooner if I feel unwell or become symptomatic.
Afatinib is not a option at the moment as the disease is stable and I need to have progression to get it. Even then it is not set in stone :(. Although it is now licenced, it is not yet approved by NICE. The only option maybe to have to pay for it, that would be thousands that we don't have, but we will cross that bridge if/when we come to it.
There are other options like other chemo's and clinical trails and even try Iressa again or Tarceva.
For now....I am slowly getting over this last chemo and when I get to the day I feel normal again I shall be making the most of every normal day I have. That includes a much needed holiday. I am keep everything crossed that 'stable' becomes my best friend and that it's going to be a long relationship :)
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