New chemo treatment

[Harrypalmer]

Hi, Had Pleurodesis operation last week which was a success but today I saw my oncologist who said that the cancer has spread to my other lung so I suppose that I'm now at stage IV. They want to start new chemo treatment , Carboplatin & Pemetrexed next week as previous Cisplatin chemo didn't do its job. I'm trying so hard to stay positive for the family with the prospect of new chemo treatment but would like to know if anyone else has had this treatment and if so did it stop the spread?

[Hidden]

Hi Moni, good news about your Pleurodesis operation, but I am so sorry to hear about the cancer spread. I had Cisplatin (only 1 course as it has given me tinnitus ) changed to Carboplatin along with Vinorelbine after my surgery. They were able to get a sample of my tumour before my treatment started so the chemo was targeted. I would have thought this was the same in your case, so it is unlucky that it has not been effective. Did your oncologist give you his thoughts on the next chemo regime? Try not to feel too down about things and I will be hoping that this all turns out well for you over the coming months.

Take Care

Rabbie

[Harrypalmer in reply to Hidden]

Hi Rabbie, great to hear from you and always the first to reply, you sure are a great supporter for this site which must give so many other suffers a lot of hope and support. As far as I can recall, if these three cycles don't work then they will try another chemo of which I don't know the name. They are still waiting for the results of the mutation gene which I don't really understand. I may just give the first round a go and then see how I feel because at the end of the day I don't want to spend the rest of my days just being ill and not having the strength to do things. I'd rather do things with the family whilst I still have the energy and have the ability to laugh. That's' the difficult choice one has to make. I'm never going to be cured so do I live a shorter life without treatment and all the associated symptoms or do I try the chemo and feel like crap and not having the strength to go anywhere or do anything. Big, big decision. I'm also seriously thinking of getting a one ticket to Switzerland. I'm a young at heart 61 year old and feel quite fit and look incredibly healthy and my grown up son and daughter do not want their last memories of me to be of a sick, emaciated, morphine dosed up old woman. A lot to think about especially when you are also trying to process the devastating news that you have maybe a year to live. That's how I feel today, perhaps tomorrow will be more positive. Keep well, Moni x

[Hidden]

Hi Moni,

I hope that you are feeling much more positive today.

Fortunately lung cancer treatment has improved over the last few years, and it is not so much of a case of one size fits all and more of an individually tailored approach. Your Oncology team will closely monitor you and help you in making decisions that are best for you. The mutation gene that you mentioned is EGFR or Epidermal Growth Factor Receptor, and you will have been tested to see if you are positive for this gene. There are a couple of fairly new drugs available that may help to slow down disease progression.

Everybody reacts differently to treatment, therefore you need to see how you feel.

Your age and fitness will help you enormously, as will a positive mindset. I hope that continuing support from friends, family and contributors to this site will help you to make decisions that are best for you.

Best wishes,

Beth.

[Harrypalmer in reply to Hidden]

Hi Beth, I actually feel that I was abandoned by my oncologist for five months. Had lobectomy last October and started Cisplatin chemo in November through to Feb. My next appointment with oncologist was to be end of July, await of five months. Unfortunately I didn't feel we'll and had Pleurodesis operation a couple of weeks ago whereby after a CT scan found that I now have widespread Mets on other lung. So basically the Cisplatin didn't work and I feel that no one bothered to check as they were quite happy to leave me from Feb through to July. I now start Carboplatin chemo again next week for four cycles and if that doesn't work they will try an alternative treatment. Am waiting for result of EGFR test. I'm in the hands of my oncologist and don't know if I'm getting the latest drug or not.

[Hidden]

Hi Moni,

I'm so sorry that you feel abandoned by your oncologist for this period of time.

The NICE guidelines for lung cancer treatment advise that all patients should recieve an initial specialist follow-up appointment within 6 weeks of completing treatment to discuss ongoing care. Offer regular appointments thereafter, rather than relying on patients requesting appointments when they experience symptoms.

Have you spoken to your Lung Cancer Specialist nurse at all? S/he should be your best source of information and support.

Beth.

[suesal123]

I began on Iressa, which is a targeted therapy for EGFR mutation, and was on this for 7 months before it stopped working.Tomorrow I will be having my 4th round of IV chemo with Carboplatin and Pemtpetrexed. So far I have coped well with this - I have treatment on a Wednesday and I start to feel tired on Friday with Saturday & Sunday a bit worse but not horrendous and then start to feel better on Monday. So far my tumour has shrunk and my cough has nearly gone.

Sorry to hear about the problems with your oncologist I see mine between every round of chemo and have an X-ray every time I see him - so about once a month & we discuss the progress and other options further on in the future. (My cancer is inoperable)

Hope this helps

Sue xx

[Harrypalmer in reply to suesal123]

Hi sue, I start first round of Carbo/pemt tomorrow and like you will probably have the same symptoms as when I was on Cisplatin , okay for first few days then very tired for 3-4 days and then back to normal which is all bearable and a small price to pay if the chemo is doing its job. I did see my oncologist before every round of chemo but after 4th I was just sort of signed off until 5months later. I'm not so sure that an x-ray would have shown that the cancer had spread in my case hence why they did another CT scan. My oncologist said that if I proved positive for EGFR mutation then I would be her first which isn't very encouraging as it sounds quite rare. But hey-ho I'm going into this next battle with a positive and open mind. Am pleased to hear that the treatment is working for you and long may it do so. Will keep you posted as to how I respond to treatment. This site is so full of amazing and supportive people, I find it incredible that total strangers care and are interested in your well being and take time to offer advice. Moni xx