Mum - second-line treatment

[flatterycat]

Hello

My mum has NSCLC grade 3b and is now moving to second-line treatment after the immunotherapy/chemo combination failed to work after an initial good response. Last week she had radiotherapy to the main tumour to help reduce the size and treat her breathlessness and hoarse voice. She is now heavily fatigued since the radiotherapy.

We met with her oncologist yesterday who was at pains to state that further treatment may not prolong life much more and may in fact cause more harm in terms of quality of life. Mum is very aware of this, but still wants to give it a go. She has said that if treatment becomes too much, she will stop.

During the meeting it was agreed that mum would go on to docetaxel. I asked him about adding in nintedanib and, although he isn't convinced it will add much benefit, he has agreed to mum having it.

When I got home I did some more research and after reading several forums and other documents I came across evidence and people who have been given Erlotinib/Tarceva despite being EGFR negative and had very good results. I also found this quote:

“A TKI should be strongly considered for all patients in the second-line, third-line, or maintenance setting, including those patients who are EGFR negative and who may not have the clinical predictors of outcome previously reported”.

Is there anyone who can advise me on whether this is something my mum can ask for? She is NGFR negative so I assumed targeted therapy would never be offered. I would consider private if it meant she could at least trial it.

I'd really appreciate your thoughts on this.

X

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi,

Both Nintedanib and Erlotinib are TKI’s (tyrosine kinase inhibitors) which are targeted therapies. You have said in your post the oncologist has agreed to your mum having Nintedanib even although he isn't convinced it will add much benefit.

I have attached a link to our publication on targeted therapies for lung cancer which should explain which targeted therapies can be used and how doctors decide which ones to prescribe.

roycastle.org/app/uploads/2...

If you have any questions please email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200 Mon-Thursday 9.00am-5.00pm Friday 9.00am-4.00pm

Kind regards

The helpline support team

[simlut]

Hi, I’m sorry the first line treatment hasn’t worked.You say it initially had a good response, can I ask, why did they say it failed?

I’m asking as my dad had 4 cycles of chemotherapy and immunotherapy and then a CT scan that showed his original tumours had shrunk but there appeared to be new nodules so the Oncologist was going to change my dads maintenance treatment plan because of this to Docetaxal.

I asked them could it be the new nodules grew in the 7 weeks between my dads initial CT scan and him starting treatment so they may not be new at all? Or could he have pseudoprogression inflammation from the immunotherapy?

They then said they would review all his information and scans (he had MRI and nuclear bone scans in between treatments as he broke his femur and then had urine retention) and discuss my dad in the MDT meeting.

I sent the Oncologist an email with my concerns and questions about his treatment options.

The day after the MDT meeting we spoke to the Oncologist and they said they had reviewed everything and they though the new nodules were in fact inflammation so my dad would stay on Pembrolizumab (Keytruda) as the maintenance plan.

I hope whatever treatment your mom has works for her xxx

[flatterycat in reply to simlut]

Her first 4 rounds contained two chemos and immunotherapy. At the end of the 4 sessions there was a good reduction. Then she went down to the 1 chemo with immunotherapy and after around 6 cycles there was growth plus new areas.

[simlut in reply to flatterycat]

This is what worries me, my dads only on immunotherapy now. It’s like being in a constant state of apprehension.I’m glad your mom can do another treatment and I hope it works xxx

[flatterycat in reply to simlut]

Thank you. Yes it’s just a rollercoaster isn’t it. The consultant isn’t convinced that mum will gain anything from more treatment and I don’t know why he feels that. However mum is happy to try it.

She’s really struggling with fatigue since having 5 sessions of radiotherapy. It’s horrible to watch her so tired and just not with it.

She was ok before the radiotherapy so I’m hoping it’s just the side effects

I hope your dad does well on the immunotherapy xx

[simlut in reply to flatterycat]

Thank you 😊

I’ve started giving my dad multivitamins to try and him a boost and he’s been taking milk thistle tablets since September before he was officially diagnosed.

Hopefully your mom will start getting more energy soon xxx