Well I had my first visit to the Macmillan Unit today. They had received the results of the molecular testing yesterday so I got an appointment today. I thought that was really good but I am disappointed how long this bit has taken. I got the official result it was cancer (which we did already know) on 18th December 2014 when I was told they needed to do the molecular testing. It is T4 N2 M1a. I did look it up but found it was quite varied depending on what causes the T4
I have my pre treatment appointment a week Thursday and presumably the chemo will start fairly quickly. I have been told I am going to get Pemetrexed and cisplatin chemo. I have a leaflet that I have yet to read. But basically I will have 4 lots of chemo over a 3 week cycle.
I did get asked if I wanted a prognosis of length, I'm not sure my husband did but I wanted some idea. Dr asked what I was thinking and I said a couple of years. Her answer was we will see what we can do. Not sure that is what I wanted to hear but if you ask you get. I am aware that it is a very flexible time scale, its not months but I wonder if she was thinking more of maybe a year.
Any thoughts on what I should be thinking and asking when I go for my pre chemo appointment?
Jeanne
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JeanneLe
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I'm sure that if you have been reading the posts of other members you will see that being well informed, communicating with your care team and remaining positive are so important. Do you know whether your tumour has been tested for mutations? This is something that you may wish to ask at your appointment. If you haven't already, please ask to be introduced to your lung cancer nurse specialist as s/he will be a valuable source of information and support. Try only to read from trusted sources on the internet such as Roy Castle, Macmillan and Cancer research UK, as many others may be misleading and outdated. If you are looking for information, we have some useful booklets which you can view at roycastle.org/how-we-can-he...
Good luck with your chemo, Jeanne, I'm in a similar position to you regarding diagnosis, staging and treatment plan - just a bit further on as I've just had (last week) my 4th P & C chemo session.
You asked what questions you should ask when you go for your pre-chemo appt, - I would ask/check whether you're able to ring in to your Chemo Day Unit for advice in the 3 weeks following each treatment, as I've found this service at my CDU very helpful - sometimes I've just had a niggly symptom/side effect that I wanted to check with them, and this final time they were a great help when I had more trouble with sickness than I'd had before.
If you're seeing your consultant at the same time, you could ask him/her what treatment they're considering for after the chemo - in my case I'm having radiotherapy (12 daily sessions) afterwards, but this was only decided for definite after an X-ray half-way through the chemo cycles which showed the tumours were responding well to the chemo.
Hope your chemo goes well, and that you don't have too many side effects.
Thanks Sue, its nice to know it works. They were talking at the meeting yesterday about being able to contact people and to sort out my regular medication with the Dr's before I start the journey. I think I will start making a list of the things I need to know and do as my memory tends to be a bit all over the place at the minute and I seem to spend a bit of time trying to remember the things I have forgotten.
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