Non-small-cell lung carcinoma (NSCLC) treatment

Hi Danil

So sorry that you have cause to be on here.

I only have direct experience of Small Cell Lung Cancer so cannot be of practical help. However I do know that there are people on here who do have experiences of this treatment combo; hopefully they will be along soon to offer advice and support.

I wish the best possible outcomes for you and your Mom.

Kegsy x

Hi Danil

I am sorry to hear about your Mum's diagnosis. I believe using immunotherapy in tangent with chemotherapy was only released a year ago, so their may not be many that have had this combination to give their experiences. You can do a keyword search in the forum to bring up any threads that contain those medicines to see if you can find previous posters speaking about it.

I hope it all goes well and the side effects are minimal.

Hi Danil

I'm sorry your Mum has this diagnosis, and I sincerely wish her well.

I was also diagnosed with NSCLC adenocarcinoma, in June last year and was given the chemo carboplatin and pemetrexed in July. I had 4 (8 hour) sessions and then regular CT scans every 3 months. I also found that it was accumulative ie the first one had less effect  on me than the last one. The chemo was given to me on the Thursday and I usually felt my lowest the following weekend then slowly picked up again. The treatment went well for me and I didn't suffer too much with side effects. I kept taking all the prescribed pills that were issued which I believe reduced the expected side effects. I felt as though I was running on half used batteries rather than new ones, so had the occasional afternoon nap. The other aspect is the mental strain, as it takes a while to accept the diagnosis, but slowly after time it wasn't always at the forefront of my mind, as it was in the early days. 

Since my 4th treatment finished  September 2018, I felt really good and my CT scans kept saying no change which was great as I was feeling like my old self again, apart from a cough I hadn't been able to shake off. Unfortunately my latest scan has showed that it has now spread to my spine, and lymph node, and hip. This came as a shock as I was still feeling ok. So once again I am back on the same chemo as before. I had my first dose of the same chemo last Thursday, and although tedious not too bad. I'm taking life at a slower pace but still enjoying life, and not taking it so much for granted.

I live in Guernsey and there is not the option to have immunotherapy here, so I'm just grateful to be able to have the chemo. 

I wish you and your Mum all the very best 

Best wishes

Dave

hi david f. sorry to see you have found yourself here.  regards immunopherapy is it not possible to have that in England?   we have Gina who posts here from Jersey and that is what she does. TC..

Your mum is extremely "lucky" to being treated with Tagrisso. I was told it was only available on the NHS as a Stage 2 treatment for NSCLC (I am also Stage 4) so would have been given Afatanib. However, I was fortunate to have company health insurance so have been on Tagrisso since March. I don't know about the Tagrisso + carboplatin/pemetrexed combination, but I have been fortunate that the side effects from Tagrisso have been negligible.

I wish your mum all the best

John

Hey Darlo and David

Just to say I have not immunotherapy yet. Though if I do swap to it, we have immunotherapy in Jersey. I have asked David in the past as i was surprised it isn't available in Guernsey. Wonder if it's down to training or budgets. Both islands have their own rules and tax system etc. We pay 5% GST on literally everything we buy or all services/bills ( like UK Vat but nothing is exempt) Guernsey doesn't have this.

Anyway sorry, a little off topic. Everyday is a school day!

Hi @Kegsy, @Ginajsy, @David F, @darlo, @John Boy2!

Thank you all for your feedback! I really appreciate your support and useful information. Let me share an update about our treatment here since there were a lot of events.

We started on Friday 22-Nov. The chemo scheme was changed from Carboplatin to Cisplatin. So our current combo is Cisplatin + Osimertinib (Tagrisso). How it was (sorry for details, but I think it's better to know):

1. Friday. More or less ok during the day we took the Chemo

2. Saturday. Strong nausea, frequent vomiting, and a headake 

3. Sunday. The worst day at the moment. Very high blood pressure, headake, nausea. Vomiting became less

4. Monday. The first day Mom felt better, normal blood pressure. She still has nausea but started to eat a little bit. I hope it will be better since that moment. 

A little off-topic, just to clarify one moment. Tagrisso (Osimertinib) is targeted therapy, not immunotherapy.

thank you Gina. we learn something new every day.  TC

Hi Dani

I hope your mother continues to feel better. I have had cisplatin and am on carboplatin now so can fully sympathise with the nausea. Just to check that they gave you an emergency oncology line to contact and examples when you need to? Such as frequent vomiting or not moving bowels for a few days etc? If temperature goes to above 37.5?

They can tweak and adjust side effect management medication now you know what one's your mother may get so please let them know what's gone on this time.

Also it is usually a week to 10 days (or up to day 14) after the first day to be extra vigilant with temperature checks and signs of not feeling well i.e. breathlessness or similar. This is because this will be the time if blood levels fall it will be at their lowest. I have learnt now to air on the side of caution. I know the signs of my blood levels falling and go to get them checked when I can feel it's happening.

Hope you keep well 

Hello Danil,

What hospital is your mother receiving treatment? I just want to ask my oncologist why Tagrisso is not being offered as a Stage 1 treatment down here in Canterbury. I am 67.5 years old but have to continue working to maintain company health insurance, although even this stops in March (Axa only support "chemical/bio treatment for 12 months).