Hi Bluette,

This is the first time I've ever replied to a message but I saw you still hadn't had a reply. Obviously the decision to have or refuse chemo is a deeply personal one but I have a little experience of your situaton. In 2005 my sister, in her early sixties, had her left lung removed due to lung cancer, we were never given a staging but it had spread to several lymph nodes, the pericardium and the diaphragm. Like you she was referred to an oncologist and he told us patients who had chemo after surgery stood a 4-5% increased chance of living longer than those who only had surgery. At that point my sister was really ill and thought she wouldn't cope with the chemo so she opted for a better quality of life even if it was a shorter one.

She actually lived until the end of 2020 much to the surprise of her surgeon and GP and when she died it wasn't due to a recurrence of the cancer but pulmonary fibrosis in her right lung. The decision to refuse chemo worked out for her and she saw her grandchildren grow up but she had accepted that it might shorten her lifespan. In the 15 years since her diagnosis so many new chemo drugs have become available  presumably with fewer side effects hopefully someone with experience of them will reply to you.

I hope that everything works out well for you whatever decision you make.

Take care

Helen

Hi Helen

I am absolutely hopeless with even the most basic computer technology, so may well have sent you a message already!  I tried to send you a message this morning, so apologise if this message is a repeat of the one I sent you earlier.  Firstly, thanks very much for replying.  It really helped to receive communication from someone who has exerience of a situation similar to mine.  I know that each of us with cancer is an individual and two people with similar diagnoses may have very different experiences.  However, how wonderful it was to hear that your sister lived for another 15 years, despite facing a very serious condition.  

My oncologist has told me the name of the drugs that she proposes to use: carboplatin and vinorelbine.  She has given me a leaflet about the side effects, so I feel quite well informed in that respect.  I have existing problems with my feet: severe flat feet and arthrtitis in several places.  The oncologist is a bit concerned that the carboplatin may exacerbate these problems, as one of the side effects is numbness in the feet, which can be long lasting.

As the oncologist isn't inviting people in for chemo at present due to covid rates I have plenty of time to make a decision.  It was very kind of you to reply to me.  I am sorry to hear that your sister experienced pulmonary fibrosis, but very pleased to hear that she had so many years of life and was able to see her grandchildren grow up.

Thanks again, and take care

Bluette