Any experience of non-small cell lung... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Any experience of non-small cell lung cancer with bone and now liver and peritoneal cavity mets

Esme85
Esme85

Hi,

Bad news about my mum today. Urgent scan she had last week showed liver and peritoneal cavity mets and progression of lung primaries.

She stopped maintenance pemetrexed following four cycles of cisplatin and pemetrexed in November due to side effects and was due to have repeat scan end of feb to see about 2ndline therapy but was sent in for scan last week due to ongoing pain and nausea/vomiting and weight loss.

I wondered if anyone had had experience of similar progression and what - if any - treatment options may be.

Care so far has not felt joined up in any way and even trying to get changes to pain meds has been tough so keen to know what possibilities there are so I can ask for things if necessary (it feels like we’ve had to ask and push for absolutely everything so far).

In rural area sort of on boundary of CCGs/trust areas. Wondering if 2nd opinion / changing hospital from York to Leeds is worth considering although aware it will delay everything.

Thanks in advance for any replies.

Esme x

6 Replies
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RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Esme

So sorry to hear about your Mum and how exhausted you must be all feeling, especially if your experience has been to push for things. You are entitled to a second opinion, different hospital, or private opinion. Current treatment options that may be offered may be to keep your Mum comfortable and reduce any current symptoms.

Your Mums pain relief should be priority, has your Mum been referred to the community pain management team (via GP/Specialist), discuss with either lung cancer nurse or Oncologist, where they can assess your Mums pain as an ongoing basis and adjust accordingly.

The other thing you may wish to consider is a clinical trial, which would depend on many factors i.e if your Mum is within the eligibility criteria and her general ongoing health. I have placed a link below where you can view the open trials:

cancerresearchuk.org/about-...

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 3587200

Kindest regards

The Roy Castle Support Team

Hi, thanks for your message. No trials seem suitable for my mum.

None of the people you have suggested about pain control seem to be working - it should be a priority but nothing seems to happen.

She’s been referred to two hospices today - neither has beds. Oncologist is on annual leave, hence why we didn’t hear anything from the scan for a week and then found out over the phone from the lung nurse when we were chasing it. The lung nurse was told the community palliative care team would come see us today so we waited and then at 4pm we found out that the lung nurse had been misinformed when she originally was told there was a bed in a hospice and also that the community team would not be coming out today. So waiting for a GP visit now. Quite rural so will be a struggle/long journey to get things sorted tonight. It’s been a tough day. Sorry for moaning.

Leslie42
Leslie42 in reply to Esme85

Hi Esme,

My heart really goes out to you.

Just checking that your Mum had biopsies taken, and if so were the results shared with you.

Lung cancer treatment in the last couple of years has changed dramatically and these results will show what type of treatment will most likedly work best

For instance is she EGFR positive or negative. Does she have a high percentage of PDL1msrker? Have they tested for ALK orROS1.

Ask to see results and why for instance these results mean she cannot have immunotherapy or a TKI? Or a clinical trial?

Do not be fobbed off, you have every right to to this info. Knowledge is power . Things are changing so quickly that my daughters onc nurse has even admitted that she is struggling to keep up with the new meds available.

Amazing how , everyone sits up and listens when you know things they don’t expect you to know!!!

I wish you all the luck and love in the world, you sound like you’re doing an amazing job.

Leslie

Xxx

I don’t think that you can loose anything by getting a second opinion, it could be the same or different but at least you will know. I also wonder if your mum could see a Consultant from the hospice at your mums home to help with managing the pain. I did this myself when I was in pain she came to my home for the first few visits then saw me at the hospice for the follow up visits. You could ask at Leeds about Clinical trials too. Just some thoughts. Wishing your mum all the best treatment xx

Hi, thanks for your reply and best wishes. I hope you are well. Today has been a better day as we found out mum can go to the hospice in York tomorrow for some respite and to get symptoms under control. Hoping this happens quickly and then finally to hear from oncology following the results. X

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Esme

How are things going for you and your Mum, I do hope she is more comfortable.

Thinking of you all

The Roy Castle Support Team

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