Hi Deano, so sorry to hear about your Mum. I know this period of waiting to find out what will happen next is so hard, for both your Mum & her family. I hope the DVD helps but in the meantime if you click on the following link you will find a really useful guide to take to the next appointment, which explains what questions you should ask roycastle.org/Resources/Roy... Hope this helps & good luck with everything. Emma
Hi Deano,
Sorry to hear this news, the waiting is the worst. I also have lung cancer stage 4 (never smoked) was diagnosed 16 months ago (I was 49). Whatever you do don't read too much on the internet about stats etc, they are based on old treatment regimens and are out dated. I personnaly didn't want them to tell me 'how long they thought I had' I am a nurse so know what stage 4 means in term of time scales and I didn't want it to apply to me. I have remianed positive and active and am doing very well. I tested positive for the EGFR gene mutaion so my chemo is a tablet I take every day, it has less side effects in fact after 6 months there were no more real side effects (apart from I now have very wavy hair!). Your mum should also be tested for the gene mutation as everyone in the uk is now as standard. Only 10% of people have it though.
1959, is right, once exepted it is easier to deal with. I am however making the most of everyday (we're currently travelling around the USA!) and having a whale of a time.
Let me know how you get on on Friday and any thing else I can do to help just ask.
Thanks for your support folks, its great to just read some more positive messages for a change.
I am due to go on holiday to Florida in 8 weeks with my 6 year old and im already thinking thats not a good idea.
My mum isnt the most positive person and i am worried about how much fight she will have, especially if im not there for 2 weeks.
I just hope the chemo gives her some positive news that will spur her on.
Any idea how long it may be before her chemo may start?
As i said, i suspect Friday will be the official D-Day and im wondering whats next.
Thanks again.
Hi Deano,
I would think the chemo will start within a week, they don't leave it long to start it. Your mum will have to sign the concent form. She will have to know she has cancer but doesn't need to know time scales etc (like I said in my above post, they are out of date anyway). They will also let you know on Friday what kind of chemo, it may be that she is positive for the gene mutation and therefore the chemo will be in tablet form with very minimal side effects. try not to think of too many 'what if's' you just have to take each thing as it comes. You'll find your mum is stronger than you think. In my experinece through this journey it seems that the family are sometimes more frightened than the patient, maybe its because its out of youyr control and you can't make it go away. For some reason, I find myself with an inner calm, I don't worry or fret about silly little things anymore, its quite strange really.
Have you got anyone else who can watch out for her whilst you are on holiday? I sure she wouldn't want you to miss it.
Will be keeping everything crossed for you all on Friday, please let me know how you get on and remember to just ask if you have any questions about anything.
Lyn x
Hello Deano,
I hope the news you received today was hopeful. Like your mum, I too have recently been diagnosed with cancer and have struggled to except my diagnosis. I personally found that once my chemopheraphy started I began to feel more positive and gained some inner strength. I have found the support of others from this site very helpful and positive. Keep strong and my thoughts are with you all x
Thanks for all your messages, its great to see how other people are feeling and coping with this disease.
Mum has been told its small cell lung cancer that has spread to small spots on her liver. The hospital took a biopsy from her lung but not her liver so i dont know if they can be sure of the liver spread as yet.
My mum is with the oncologist today so im expecting a rough ride. She isnt really talking about it to family or friends and wont mention the word cancer yet. She may start he chemo on Thursday so thats a quick start.
We will know more today, as long as my mum sits and listens to the oncologist. She has left the room in the past visits and we have picked up the detail from the consultants. However, they have said that if she leaves the room this time there is a chance she wont be treated as she needs to listen and understand whats happening.
As harsh as that sounds, i agree as i want her to fight this and i dont think she can if she doesnt know all the details.
Well my mum has had her first chemo session and is now home. She was in the hospital for 3 hours and she was bored more than anything else.
She hd Carboplatin via I.V and is also having 3 days worth of Etoposide and as yet doesnt feel any improvement. She is still in quite a bit of pain in her rib on the right side and strangly, a shooting pain in her bum cheek!
She is taking morphine sulphate at home but it doesnt seem to be having much effect.
When can she typicaly expect to start to feel a bit better?
She has now gone through 2 cycles of chemo with the 3rd due next week.
As expected, she is very tired indeed. This seems more so around day 3 after chemo and continues for a while. It does seem to come in waves as she can have days when she is alert and very mobile, however she can also have days where she sleeps a lot and doesnt move around much.
Also, it appears that over the last couple of days the morphine isnt having the same affect as usual. She has been in a bit of pain where usually the morphine is keeping it at bay.
She is due to visit the oncologist on Monday so we will ask a few questions around the pain management side of things.
Hope all of you are going through some positive times and i will update the blog after mums next chemo session.
thanks for thisit is really helpful .. I start my chemo... looks to be the same..triple therapy. I have no idea what to expect so this is really helpful.. fingers crossed for good news with your mum xx
Hi diano sorry to hear about your mum. My mum has stage 4 lung cancer and it has spread only got the news a few week ago. Started chemo this week everything is fine with my mum you've got to stay positive for your mum and yourself. It is a worrying time for you all but stay strong there is a lot of help available and all the people we have met are lovely. Take care x
My mum was diagnosed with small cell lung cancer in march of this year....
It was heartbreaking and for weeks I cried, got angry, cried and got angry!! Once it had time to sink in although still devastating I could start to deal with it and try and focus on mum having her chemo and radiotherapy and getting better.
I won't lie and say the treatment is easy, my poor mum has been really poorly, in and out of hospital for various complications. But yesterday was her last day of all treatment. No more chemo no more radiotherapy.
She is being scanned in a couple of weeks and we pray for good news. Our lives have been a rollercoaster since first diagnosis but as a family we have got through it.
I'm sorry to hear of your mums diagnosis and wish her all the best. The best advice I can give you which I'm sure you already do is, be there to support her and love her. She will need it.
Hi Deano my mum was diagnosed with SCLC on 11th Oct had her first cycle of chemo carboplatin and eptoposide on 21st oct none since due to sickness diarrhoea then chest infection then weakness has been in hospital twice now first time 2 weeks out gor a week now 4 weeks and now in a specialised hospice on hospital grounds who have advisedher platelets are pretty low snd her potassium is low before her sodium has been low but that seems to be ok now please help if anyone has or is going through the same i need some hope! Im falling apart and my poor mum is so weak and lost weight thank you in advance.
Hi deano, im in the same situation as you. My mums lung cancer has spread to her liver, she cant have chemo because its to toxic for her and she had radiation last year, which did shrink the cancer but its back in the same lung and now spread to the liver. Shes had 2 scans so we go and see the consultant in 2 weeks to see if they can treat her or not. Ive been so ill with anxiety and panick attacks over this. But im hiding it to be strong for my mum whos sunk into a depression over it. Its just horrendus. I hope and pray things turn out ok with your mummy x
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