Introduction

Hi Tammy I’m just starting my journey with my mum, she was diagnosed 2 weeks ago with NSCLC , we’re still in limbo at the moment waiting for all scans/tests etc before they decide what treatment to give her. Pet scan booked for this Thursday ( I’m absolutely dreading the results) all we know is mums tumour is 10cm x 6 cm , am I right in thinking this makes her stage 4? X

Hi Tamster

I read your other post and bio and it seems some of your treatment has been very similar to mine.

In my case, once the four cycles of of Carboplatin/Etopside/Atezolizumab were done I went on to the atezo alone (along with a 10 zap course of RT) and I have to tell you, in comparison's to the 3 drugs, the immunotherapy alone has been a walk in the park...

I am at the point where I go in every three weeks, have a 5 minute flush then the atezo for 30 mins and finish off with another 5 min flush - really, it's barely enough time for me to annoy my marvellous nurses!!! (But I do try...hahahaha - bless them all!!!).

Just had my 12th infusion and 13th is scheduled for Xmas eve which considering the 2-4 weeks prog at diagnosis in March/April '20 is reason enough for a daily celebration - too bad I gave up drinking 7 years ago!

I would defo speak to your onc and CNS re the liver pain - they may well be able to do something to alleviate it.

Wishing you well with your fantastic PMA and with the ongoing treatment...

Stay Strong

SiT

Welcome to the group! This journey with my mom is new for me also. We just found out she at stage 4, though I figured that all along. This site seems to be very helpful. 

Hi Tamster, and a very warm welcome to the group. I’ve read your profile, and what a year you have had, but sounds like the treatment is working well for you. Long may that continue x 

Hi Toot22, sorry to hear this. Yes it is all very scary at the beginning, especially the not knowing what is happening or going to happen. Getting to grips with all the medical jargon alone is a minefield. All I can advise is to research the words that you don't understand and ask the medics helping your mum of anything that you don't understand. I'm sorry but I couldn't advise on whether that makes her stage 4, the reason I have been put at stage 4 is because of how much it has spread into the rest of my body (known as metastatic). I wish you all the luck in the world for Thursday, this is just the start for you all, everything will unfold and the doctors and nurses are marvelous giving the best advice. There are so many different treatments out there now. Try to remain positive so that you can support your mum as best you can. I know it's easy for me to say but also try not to be scared by the diagnosis and just take it day by day. It is a waiting game always, so that the doctors can get every piece of information possible before giving a treatment plan. Hope to speak to you soon, let us know how it goes x

Hi SiT

Thanks for sharing your experience with me. I'm loving your humour, we sound similar, it's the main thing that has got me through this. If I have a sell by date, I would much rather leave knowing I made someone laugh or smile than cry. When I had the good news of the treatments working, I announced to my 2 grown up kids that unluckily for them I am around to annoy and nag them for a bit longer. 

I was lucky enough to have just one treatment of the Cyberknife for my radiotherapy to the brain lesions. They make a mask specifically for you to wear during treatment. I looked like Hanibal Lecter , but it was very successful. 

I also had the Carboplatin and Pemetrexed alongside the Pembrolizimab (immunotherapy). The first 2 treatments I breezed through, wondered what all the fuss was about. Then as the build up of the chemo in your system it suddenly took away the strength that I had built up.

At one point the medics suspected that the cancer had spread to my liver, I had scans and tests and they confirmed it was there. I had weekly blood tests to check the liver function and it was very high, this kept pushing back the next treatment as they had to stabilise the liver with Prednisilone, before giving more drugs. My CNS explained to me that the immunotherapy is known to attack the liver and it just didn't like mine. I managed to limp through the next 2 treatments.

Had scans and the good news of everything shrinking (apart from my cheeks, double chin and waistline lol). It also confirmed that there was no cancer in the liver, it is purely the immunotherapy enlarging it, they will continue treating me with steroids for this. Luckily I have no pain, it just zaps my energy and makes me sleep. Fingers crossed this will change with just the immunotherapy alone. I have my first treatment Monday with just this. The same as yourself, I'm hoping I have enough time, in the treatment sessions, to have the giggles with the nurses that has soooo got me through this. Then to continue every 3 weeks.

Good luck with your treatment, keep the humour it's fab

Hi SlipStitches,

Thank you . Sorry to hear about your Mom, hopefully there is a lot they can do to treat her. Yes the site has a lot to look at and to take some comfort that we are not alone in this. What a wonderful welcome I have had from so many. Stay strong x

Hi Chelle, Thank you. Have read your profile, wow you have had a bit of a time of it too. Keep on going lovely lady. What a fab group this is. Just the support I was looking for and to know that there is someone who has had similar experience, to make you know that what you are going through can be quite normal (in an abnormal situation).

Take care x

Hey Tamster

Thanx for that - we do indeed seem to share a similar sense of the mildly/insanely ridiculous...

You may wish to sign up to the "incorrigles" or more correctly, "living with incurable cancer" forum - once on there, have a look for the "RT Itch" string - should make you giggle!!!

I'm going to tell you something which will very probably make you dislike me immensely... I have lost about 15kg since I started treatment! I would like to think that some of it is down to maintaining my exercise regime and a healthier diet but my credit card receipts just WILL NOT lie about massive Ben&Jerries expenditure... Hey ho...

You do seem to be very pragmatic, so all I can suggest is that you look at eating as much fresh fruit as you can - I now have an apple, an orange and a banana at least every day and whilst this may not seem much... back in the day, that would probably have been my entire annual intake of fruit other than liquid grape natch...

And of course, trying to exercise if only a little each day, and then a little more the next.

Also, to help with regularity (a REAL pain for me especially on the chemo) I have a spoonful of Andrews every night just before going to bed (and not getting to sleep for 5 or 6 hours...) - that seems to do the job (so to speak...).

So, nice to meet you, keep on keeping on &

Stay Strong

SiT