Question re: decision to stop mum's treatment

[Manfrenjensen]

Hi everyone,

I'm looking for some advice relating to my mum's diagnosis of stage 4 non-small cell lung cancer, if possible. She was diagnosed in February 2016 and she received first line treatment of Pemetrexed up until December 2016 when they needed to stop because her kidney function was worsening and, although the cancer had shrunk and then stabilised in her lungs, it was continuing to spread elsewhere (she has bone mets and it has also spread to lymph nodes and stomach lining, amongst other places). They could only use Pemetrexed rather than a combination chemo because she took a stroke very soon after the diagnosis (we believe due to coming off her blood thinners to allow them to take a biopsy).

Next up was Nivolumab. After 3 infusions she took pneumonia and at her next appointment they said they wanted to stop treatment because it wasn't working and they felt she wasn't in good enough health to continue. We argued that surely only 3 treatments wasn't enough to determine if the Nivolumab could make a difference and they agreed to continue for a while longer and she recovered well from the pneumonia. Unfortunately, at her last appointment we are again in the position that they want to stop treatment because it has apparently continued to spread and has also appeared in new places. I should mention that we live in Glasgow, Scotland and my mum is 60 and is otherwise in fairly good health.

We're all absolutely devastated and I feel so helpless, I'm letting my mum down and can do nothing to help her. I guess my reason for posting is just to reach out for some advice from people who are much more knowledgeable than me - is there anything that I should be asking/challenging the oncologist about at this stage? He said there is no third line treatment she could try. We had an appointment to discuss clinical trials and they got our hopes up about the Matrix trial but at the end of the appointment suddenly realised she is ineligible for it due to a certain type of medication she takes.

Any advice from anyone who has been in a similar position about where we go from here would be much appreciated. I feel it's much too soon for the oncologist to be giving up on her. I could understand if her quality of health was poor but at the moment it's fairly good. I contacted the oncologist asking to arrange a second opinion but my mum felt it was all a bit too much for her to handle straight away. I'm going to try to raise the subject again with her soon.

Thanks for taking the time to read this - it turned out much lengthier than I intended! Has anyone else been in a position where treatment was stopped possibly prematurely in this way?

Many thanks.

Carlyn

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Manfrenjensen,

welcome to our forum, I am very sorry to hear about your mums diagnosis this will be a very stressful and worrying time for you and the whole family. It is dissapointing to hear that treatment for your mum has stopped, it can be difficult to understand the reasons for this and you should get back in contact with the the oncologist to discuss the reasons why this descision was made, if you are still unhappy then ask if you can have have second opinion. The lung cancer specialist nurse can be a valuable source of help as they are part of the team involved in your mums care, it may be worth getting in touch with her to discuss your concerns.

If you wish to speak with someone please give us a call on the nurse led helpline freephone 0800 358 7200

Kind regards

Roy Castle Helpline

[Manfrenjensen in reply to RoyCastleHelpline]

Thank you so much for your reply and support, it is much appreciated.

The lung specialist nurse has been a really good source of support so far, I think I will get back in touch with her once I've raised the subject of a second opinion with my mum again.

Thank you again xx

[Glynn2890]

Hi Carlyn, I lost my beautiful husband to this dreaded disease. I only wish now I had stood up for him even more!

Why not try that new immunotherapy again?? Tell them to show you the proof it's not working at all. My husband also was declined for the clinical trials because of a medication he took!

I so wish I had asked more questions

To know exactly what was going on!

In the US, big pharmaceuticals run the trials. Maybe in ur country you may have

a better chance. This cancer is this world's biggest enemy! We need to fight together

For a cure. God bless your mom and

You & family.

[Manfrenjensen in reply to Glynn2890]

Thank you for your reply Glynn, I'm so sorry that you lost your husband to this horrible disease!

Thanks for your suggestions, it's really helpful to hear from people who have gone through the same thing. Please don't beat yourself up about not asking more questions at the time - it's easy to think that with hindsight but when you're in the middle of it, it's such a confusing and distressing experience.

Hopefully promising new treatments, and ultimately a cure, aren't too far away.

All the best xx

[Hillyblue]

DEAR Carlyn

Sorry to hear about your mum. I too have lung cancer and have recently started a trial in America for the mutation that I have which is less common than the ones which have standard treatment.

Has your mum been tested for targetable mutations? I'm assuming she has? But if not and especially in the case of NSCLCs this is essential.

If your mum is not eligible for a clinical trial but your oncologist feels that the drug could help you can also apply to the pharmaceutical company for compassionate use.

I wish you all the best. The world of lung cancer treatment is developing fast and there always new drugs on the horizon

[Manfrenjensen in reply to Hillyblue]

Hi Hillyblue, thank you for taking the time to reply to me. I hadn't considered the possibility of applying to pharmaceutical companies so that is a really helpful suggestion for me to investigate, thank you.

I'm sorry to hear about your diagnosis but glad to hear you're taking part in a trial - how is it going so far? Do you mind me asking what mutation you have? I really hope it all goes well for you and the trial is a success xx

[Hillyblue in reply to Manfrenjensen]

Hello again

It's early days on my trial but going OK so far and managing the side effects.

My mutation is EGFR but a rare form which does not normally respond to existing targeted therapies.

It is called Exon 20 insertion.

I hope you find something for your mum very soon

Hilary

[TerryJean]

I am so sorry to hear about your mom. I lost my mom 7 weeks ago to this horrible disease . 😭. This is my moms story ...

She had adnocarinoma stage 4 with metastatis to the lymph nodes , bones , and brain. She was also positive for the EGRF factor .

She started on Iressa & was "stable with no new growth " but then the brain lesions muliplied so she went into Tagrisso - but it was not helping . My brother and myself had to make the hardest decision ever - to stop all oral medications and call hospice in .

She stopped eating and drinking / we where warned not to force her or she would get pneumonia . Pain was horrible - but thankfully hospice helped with liquid morphine. 2 weeks later she passed at home with us present peacefully. We are in deep mourning for her.

I suggest ask your mom what she wants .... listen to her. If she wants to stop - call hospice in. They are wonderful people. Also listen to the oncologists opinions.

One other thing remember to take care of you! We as caretakers suffer a lot ! We neglect ourselves - trust me I know!

Wish I had more to offer you much love to you and your mom .....

Terry

xo

[Manfrenjensen in reply to TerryJean]

Terry thank you so much for your kind and thoughtful reply. I am so sorry to hear that you lost your mum so recently, that must have been such an awful experience for you and your family.

I think I will take your advice regarding contacting the hospice - I've heard people say it's a good idea to build a relationship with them early on. I'll also try to broach the subject of a second opinion with my mum in a few weeks (even though I know it will upset her) and will follow her lead in what she wants to do.

I'm so sorry again for your loss xx

[TerryJean in reply to Manfrenjensen]

Much love to you and your mom.

xo Terry