What next?: Hello My mum was diagnosed... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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What next?

flatterycat
flatterycat

Hello

My mum was diagnosed with NSCLC last April. She had three rounds of keytruda along with two chemos and after her first scan, it showed a good reduction in the tumour and lymph nodes. She then continued with the immunotherapy and just one chemo. After her second scan there was marginal growth, however her consultant wasn't overly concerned and wanted her to continue for another 3 rounds because he said that it could still work. I was worried because I felt that if there was growth after 3 sessions then I couldn't see how it would improve. Then on Monday, Mum had the results of her third scan - her consultant said that the tumour had grown and that he would like to see her on Friday to discuss other treatment options.

I know that they can't cure mum. but I am clinging on to the thought that she could have the cancer managed and live a few years with it.

Mum has also now developed a hoarse voice and is fatigued a lot, which seemed to be down to her treatment. I would like to know if there are other treatment options available? Are they able to try different chemos or immunotherapy drugs? My mum's biggest fear is that they will give up trying to treat her.

She does not have the type that can be helped by targeted therapy and her PDL was less that 1%, even though they still gave her immunotherapy.

I suppose I just want to know if there are other treatment options that the consultant can use. I am so worried that he will say there is nothing else available.

18 Replies

Hi this is exactly the same situation we are in with my mum even down to last April diagnosis! Our mum is going to see her specialist next Monday to discuss if there is a next treatment plan and we are putting every little bit of hope we have into hoping there is as it will completely devastate us if there isn’t 🥲🥲🥲 if we find out anything sooner I will post or message and please keep us updated as to your mums options too maybe thanks and good luck xxxxx

flatterycat
flatterycat in reply to Mistyglo

Hi there

I'm sorry you are also going through this and really hope that you get some positive news. I will keep you posted on what they suggest. My mum is 74, but really 'young' for her age and still working! She has always been so active and never been ill before, so it has hit hard.

Thanks for your support.

Sarah x

Mistyglo
Mistyglo in reply to flatterycat

Yes me and my family too, our mums 65 and still very young and active etc, just can’t imagine life without her honestly it’s just soo sad , I am wondering what these trials are about and for as I’m wondering wether it’s worth our mum mentioning when she goes next week x good luck your side x I’ve found it’s just been so sad because of the COVID etc Cas they havnt really had the centres to attend to go and can’t with people Similar as I know my mums pretty much felt left to etc 🥲

Mistyglo
Mistyglo in reply to Mistyglo

Chat *

flatterycat
flatterycat in reply to Mistyglo

Yeah covid has definitely made it all so much harder. I am going to ask the consultant about trials when I see him with my mum on Friday. Where are you based? We are in Cheltenham and the department here seems to have a well-known oncology dept, which is reassuring.

Looking at info on line, it seems that there is a next 'line' option, which involves a targeted drug alongside chemo. Not sure if my mum can have this as she sadly tested negative for all the genetic markers. I will keep you posted. x

Mistyglo
Mistyglo in reply to flatterycat

We’re in bury Manchester and yes I will be writing lots of questions down before next week so we don’t miss a thing x good luck and let’s keep each other posted xx

mundy
mundy in reply to Mistyglo

If the hospital insist that no companion/carer/ escort is allowed attend the appointment due to Covid please insist on phone or video inclusion

We have had to do that so my husband can feel involved

He stays outside but I phone him so he hears everything and can ask questions. It’s not ideal but I think it is important that carers are involved as much as possible

Mistyglo
Mistyglo in reply to mundy

Thank you for that x

I had 5 chemo and keytryda and similarly the tumour was growing so all stopped ( last one was 29 dec)

Yesterday I began a different chemo. Again it is every three weeks and palliative, a mixture of IV and tablets.

Nintedanib (vargatef) and

Docetaxel

I was also put forward for a trial but missed the criteria on that.

So there will be something else for you mum.

flatterycat
flatterycat in reply to mundy

Thank you Mundy, it really helps to hear that there are other options out there. I'm sorry you are going through this though and really hope that the new treatment works for you. Do you mind if I ask whether you are positive for PDL1? My mum's result was less than 1% so even though they put her on immunotherapy (keytryda) we knew it may not make much difference. Did you ask for a clinical trial?

Sarah x

mundy
mundy in reply to flatterycat

I had 40% PDL1 so just on the border for immunotherapy

They were hopeful but alas it wasn’t to be

My name was but forward for a trial but I didn’t fit the criteria due to other illnesses I have

As you can imagine that was a difficult week.

On treatment I still felt I had some control. Now back on treatment and hope to get fully vaccinated and see some improvement in lockdown so I can make some decent moments with people I care about.

flatterycat
flatterycat in reply to mundy

Last time we saw her doctor, they talked about radiotherapy. I don't understand why some people have this and others not. I also worry that radiotherapy is a last hope treatment. As for the chemo - I didn't even realise that there were different types.There's so much reading out there that I get confused.

Fingers crossed that your new treatment works well.

mundy
mundy in reply to flatterycat

Radiotherapy can shrink the tumour

I am told mine isn’t suitable, but I have had it for treatment of bone secondaries and it does help a lot with the pain from them.

I’ve given up reading too much, when they mention / recommend something then I look it up

Or when people on here do

mundy
mundy in reply to flatterycat

Spent this morning trying to organise delivery from our favourite local restaurant for Valentine’s to treat my husband who has been awesome.

flatterycat
flatterycat in reply to mundy

Oooh what a lovely idea.

My dad has had 4 cycles of chemotherapy Carboplatin and Paclitaxel with immunotherapy Pembrolizumab (Keytruda) and he will remain only on immunotherapy every 3 weeks.I’m worried it won’t work without the chemotherapy with it because his PDL1 was less than 1%.

The Oncologist originally said my dads scan results after the 4 treatment cycles was mixed and the original tumours had shrunk but there were some new nodules. They were going to switch to a different immunotherapy or Docetaxel chemotherapy. I asked them if the new nodules could have grown in the 7 weeks after his scan and before he started treatment so they aren’t new at all or if they could be pseudoprogression from the immunotherapy.

The Oncologist said we will look at everything again and discuss in the MDT meeting. The Oncologist called back and said they thought the new nodules were inflammation so he will remain on the Immunotherapy as planned.

I guess the next treatment line will be Docetaxel if and when the immunotherapy stops working.

I emailed the Oncologist before the MDT meeting about my concerns and with lots of questions about treatment options and more but they haven’t replied yet.

It’s not knowing all the time that makes everything worse.

I’m sure they will have more treatment options for your mom so stay positive xxx

flatterycat
flatterycat in reply to simlut

Hi there

Yeah the not knowing is really difficult. Also not having any real control over things and not being able to do much to make it all better. X

So My Mum had her appointment today. It was horrible because I knew something was up when we were put in a room and the doctor attended with the nurse. He has basically said that Mum's tumour in the upper left has grown but there is also more cancer in the chest area. This means the treatment - immunotherapy/chemo is not working. He talked to us and it came across as very negative even though he was lovely. He was not at all optimistic about second line treatment helping mum but said he would try it. He kept saying that we would have to have a conversation about whether to continue treatment if things continued as they are now and more words to that effect. It really felt like he was basically saying, mum's life was very limited.

At the end it was agreed that mum is going to have 5 sessions of radiotherapy on the main tumour to help shrink it and help with the breathlessness and hoarse voice. He then talked about a chemo drug called Docetaxel. I asked him about Nintedanib (vargatef) and

Docetaxel and he said that he didn't think it would add any benefits for mum.

Mum is still determined that she will be here for a few years yet and happy to go for all the treatment they can throw at her.

I just feel so very scared and want to hang on to any thread of hope I can. Her cancer is still confined to the chest which I thought was a positive, but clearly not. I am also feeling angry that they continued with the same treatment for another 3 rounds (3 months) despite the last scan showing marginal growth. To my mind this should have meant a new treatment plan. Why continue with something if it's not helping?

Sorry for the long post. I am all over the place right now.

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