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
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