I am a 69 year-old woman and was diagnosed with Stage IIIA non small cell adenocarcinoma in December 2013. It could not be operated upon, so, I was put up for curative treatment with 6 weeks of concurrent radiotherapy and 4 cycles of cisplatin and vinorelbine. I finished the treatment In early April 2014 and my first scan showed significant reductions in the size of the tumour and the nodes. In December 2015, after 1.5 years of reprieve and clear x-Ray's, a CT showed enlarged mediastinal and hilar nodes, multiple small nodules and a small pleural effusion. An EBUS Left me with intensified breathlessness, dizzyness, a very rapid heart rate, acid reflux, shivers but with no specific temperature, and tiredness and weakness. I was admitted to the oncology department at my hospital (UCH in London), where following further tests, I was found to have a lung clot, pericardial effusion of about 2.5cm, and increased pleural effusion. I was told that my heart was stable and would therefore not need a drain, just regular echo cardiograms to monitor it. However a temporary drain was installed to drain off the pleural fluid. About 1 litre came out and the drain was then removed. An x/Ray the next morning showed that it was building up again, with about 1litre there and that I had various choices: a permanent drain which I could drain at home, or a pleurodesis, which my oncologists aren't too keen on, because of everything else going on in my lungs. I have been put on lifetime heparin for my clot. Lastly, I heard that the pleural effusion was malignant.
From everything I have read, I appear to have very little time left, 4-6 months at best. My dilemma therefore is whether I should have a permanent drain installed, to control the breathlessness and strengthen myself for a cisplatin-permetrexed combo. My hreart could give up any minute with all the fluid around it and I believe that chemo has very small chances of success when one has MPE. Has anyone been in my situation and would
Reply # - February 20, 2016, 05:44 AM
Hi chelik,
Hi chelik,
Welcome to GRACE. I am sorry to hear of your recurrence and all the issues you are facing. Although we can't tell you what you should do with regard to the installation of a permanent drain, but I can provide some insight which may help you decide.
First, the statement that you have at best 4-6 months left is not accurate. Wherever you saw those figures, they are medians based on historical data on large numbers of patients, and cannot be cited as an upper limit of survival for an individual patient. Many patients are diagnosed with a malignant pleural effusion and respond well to treatment. As you can read below in my "signature", my wife was diagnosed with a malignant pleural effusion (as well as a pericardial effusion), but responded well to chemotherapy and then to the targeted therapy Tarceva. And despite the fact that lung cancer took her three years and four months later (much longer than the 4-6 months you cite), since then there have been quite a few advances in lung cancer treatment, including immunotherapies and second and third generation EGFR and ALK inhibitors. So I do not think that you should dismiss the possibility that you will respond to further therapy, which may resolve your effusions.
It would be helpful to have your cancer cells tested for mutations/genetic rearrangements such as EGFR and ALK
to see if targeted therapies may be a good option for you.
Please let us know your decision and keep us updated.
JimC
Forum moderator
Reply # - February 20, 2016, 01:42 PM
Dear Jim, many thanks for
Dear Jim, many thanks for your warm and sympathetic response to my call for advice. I have always been very aware that statistics and probabilities say very little about individuals, but somehow, with this recurrence, which has come as a battering on so many fronts, I have lost the ability to be my usual rational self. I was told that the effusions and the clot were more life threatening conditions than the cancer, and had to be dealt with first. I was also far too weak to undertake chemo straightaway. My cells have been tested for mutations and genetic rearrangements and are not positive for EGFR or ALK. My oncologist is one of the leaders of clinical trials of Nivolumab, which has not been approved for use in the UK, yet. The only ongoing trials are for squamous cell cancer, which rules me out. I imagine that chemo - carboplatin and pemetrexed - is the only treatment available for me at present, and, again only if I am strong enough to cope with it. I think that I will accept the insertion of a permanent pleural drain, but only if the X-ray tomorrow shows significant change since the last one. I think they will organise an O2 cylinder for me at home, because my sats fluctuate between 82 and 94. Many thanks, again, for your encouraging words. The story of your wife's struggle with her disease was really inspiring. She was fortunate to have you with her all the way. I live alone, but have an angel of a son, who is with me any and all times of the day and night when I need him, and who brings my two beautiful grandchildren round, to keep me youthful and positive. Best wishes.
Reply # - February 24, 2016, 12:54 PM
I know those grandchildren
I know those grandchildren brighten the day!
All best,
Janine