Well definately not the news we wanted to hear so early in 2014. We had a meeting yesterday with my oncologist to get the results of my latest scan taken on 2/1/14. There is no easy way to say this but the news is bad. Mr Nasty is very active once more with much thickening to the pleura (lining of the lung). The cancer has now spread to my lymph glands in my neck and under my arm and there is new growth through the chest wall between ribs 10 & 11.! This is bad news. But we need to keep positive and although we are both still a bit shell shocked we always knew this would happen. We can never win the war against this awful cancer but having won a few battles over the last 3.5 years it has come as a bit of a shock.
So where do we go from here?
My oncologist, bless her really doesn't know what to suggest as she has limited experience of dealing with 'old timers' like myself and my dear friend Mavis. But her suggestions were:
1)Yet more chemotherapy:
Rechallenging with Carboplatin/alimta
Rechallenging with Vinoreline - I have said no to this as the side effects were so awful and it didn't work particularly well.
Try a different drug she mentioned (vaguely) Gemcitobine but she did not elaborate.
2)She knew of no trials suitable but I pointed out the new trials emerging at St Barts. She was going to email the team there to see what is going on. I will email them myself on Monday.
3)Have no further treatment and 'wait and see'. To me this sounds the same as giving up or perhaps they are different concepts??
So that's where we are at present. My onco will agree to whatever I suggest or so it seems but I will listen to the wise words of my son 'Fight the fucker Mum' (he learnt the bad language at the Catholic school he went to! ) Alan will support whatever choice I make.
Thank you all for your support.
Tess x
Oh Tess, I'm so sorry to hear this news. what a terrible shock. You must be reeling but you're a fighter so I'm sure once you've had chance to regroup you'll make the right decison for you. Here's hoping that the new drug trials have something to offer
ReplyDeletesending you and Alan love, hugs and positive vibes by the bucket load
Claire xx
Damn and blast - there are a number of trials gping on , there is the command one out of leicester, plus there is a fak trial in london , Guy's told us about it, its not specific to meso but is an immunotherapy one that is available and certainly one we would consider.
ReplyDeleteLeicester, London and Cambridge seem to be the main places to know about trials, I would speak to Guy's as well as Barts.
Am keeping my fingers crossed
Amanda
I'm so sorry to hear the results of the meeting with your oncologist Tess. I know whatever course of action you decide to take you will fight with all your might and know that you have the love and support of family and friends.
ReplyDeleteLots of love and hugs.
Beryl xx
So very sorry Tess to hear such distressing news. Giving up is not an option with you, you are a fighter. I do hope that Barts has something solid to offer you in the meantime we are all walking this route with you. Sending you a huge gentle hug xx
ReplyDeleteSorry to hear that Tess. As Amanda says above, there are a number of trials, and I wonder if you could get cryo-ablation. They are trying that for lung cancer here in Oxford, but I'm not I'm sure if it's suitable for meso. Just starting on the VanSel trial myself, not meso specific but Mary Hesdorfer thought it was the best option out there for me as I'm not eligible for a lot of trials because of my arthritis history. The centres for that trial are Manchester (Christie), Cambridge (Addenbrooks) and Oxford (Churchill).
ReplyDeleteWhatever you choose, keep positive, lots and lots of love from Steve and pp Linda
I am so sorry to hear your latest distressing news Tess. I know you won't give up and will continue this disease with all the strength you can muster. I do hope you hear something more positive from Barts as what new treatment is available. Remember all your family and friends are walking with you every step of the way.
ReplyDeleteLove to you and Alan and sending gentle huge cyber hugs. xxx