My Mum

[flatterycat]

Hello

It’s been a long time since I last posted. My mum was diagnosed with NSLC stage 3b at the start of lockdown. She was put on immunotherapy (even though her results showed less than 1% expression).

After her 4th round she had a scan and was told there was shrinkage in the tumour and that the nodes in her chest looked clear. She’s also put her weight back on on eating well.

She’s now had her 7th or 8th round and had another scan so she will hear results on Monday when she sees he doctor.

She’s told me today that she’s had a chest cough for a couple of weeks. This was after her flu jab. Of course I am worrying that it’s a sign things aren’t going well again - is coughing again something that could signal that the treatment is not working now. I’m so worried.

Sarah x

[simlut]

I hate how this awful disease keeps us in a constant level of fear.

We are constantly wondering what’s next?

I’m so happy the immunotherapy has been working for your mom. My dad is stage 4 and has a less than 1% PDL1 and on Wednesday’s he started his first treatment cycle of Chemotherapy (Carboplatin and Paclitaxel) with immunotherapy (Pembrolizumab). He’s having 4 cycles 3 weeks apart all being well.

I’m praying he doesn’t get any really bad side effects or complications and praying that his treatment works.

Hopefully your moms cough is from a normal virus or from the flu jab. Sending big hugs xxx

[flatterycat in reply to simlut]

Hi Simlut

Thanks for your reply.

Sorry you are also going through this with your Dad.

Sounds like my mum is having similar, although she’s never been told how many cycles. She was also on two chemos and the immunotherapy, but after her last scan they decided to stop one of the chemos. I didn’t really understand why they would take away one of the chemos if she’d had shrinkage - my thinking being that if it’s working why change it?

Her side effects have been contained to fatigue, which happens on certain days following her treatment. Apart from that she’s still working (from home) and getting on with things, so hopefully your Dad will find any side effects are kept to minimum.

Xx

[simlut in reply to flatterycat]

I really hope my dad gets on as well as your mom has.

They’ve told my dad 4 cycles of both chemo drugs and immunotherapy then a scan and if it shows it’s been working they put you on a maintenance treatment so maybe that’s what’s happened with your mom.

I hope your mom continues to respond well to her treatment and her scan results are all good news xxx

[JanetteR57]

It's natural to worry about our loved ones and I only recently learned how frightened my partner gets when I get coughs after my LC diagnosis in jan 2011. However I also have experienced several serious chest infections in recent years - bad enough to be hospitalised on many occasions (pneumonia, pseudomonas and isolated with RSV) - many had similar symptoms to my original ones and certainly in 2015 when first hospitalised, I was very fearful it had returned. Indeed many of the same investigations were run within 18 months of my surgery when I started losing weight and couldn't stop. Thankfully none turned out to be due to the cancer and eventually responded to appropriate medication. It's easy to think every symptom we have after diagnosis must be related in some way to the original condition but we all experienced infections and viruses beforehand and will continue to do so (unless isolated completely from life and germs). I hope this is the case with your mum and suggest she contacts her lung nurse or doctor on Monday for tests/meds. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put things in perspective and stop fretting every symptom must signify something significant health wise. hope you and she can get some reassurance soon. good luck

[flatterycat]

So Mum has had a response from the doctor today who told her that although the report from scan was not through yet s they are happy with what they saw and will carry on with treatments as they are, she did say there was some fluid in right lung but nothing to worry about and quite normal.

I’m reading all sorts into this and particularly worried about the fluid on lungs.

Sarah x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Sarah , So pleased to hear the news which must be reassuring for you. As you can see you have lots of support from others on the forum. It is also good that you will see the specialist on Monday.Remember to write down any questions you may have.

Best wishes.

All the team at the support helpline.

[flatterycat in reply to RoyCastleHelpline]

Thank you

Mum has had a response from the doctor today who told her that although the report from scan was not through yet s they are happy with what they saw and will carry on with treatments as they are, she did say there was some fluid in right lung but nothing to worry about and quite normal.

I’m reading all sorts into this and particularly worried about the fluid on lungs. Can you help?

Sarah x