Hello everyone, I hope you are all keeping well and are coping with this situation we find ourselves in.
I am on targeted therapy Ceritinib which as far as I was aware is one of the protein kinase inhibitors which is on the government’s high risk list.
I have had no text or letter advising me to stay home for 12 weeks and am worried that I have slipped through the net somehow. I need this confirmation so that I can continue to get paid from my work.
Has anyone else on targeted therapy received a letter yet?
And should I ring my GP if I don’t receive one by the end of this week?
Thanks in advance for your advice x
Written by
BellaBe
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You are a high risk and should get in touch with your Gp and inquire about a letter, it maybe as you said that you slipped through the net or the letter could have been lost in the post. I have added the link to the government guidelines below and as Ceritinib is a tyrosine kinase inhibitor you will be included in the list of high risk patients.
If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our nurse led helpline number on freephone 0800 358 7200
I hope you are keeping okay. The NHS is in the process of writing to people who are considered to be in the at risk category and this will include people on protein kinase inhibitors. This is a difficult time and we know it can create many worries.
Because of the internal administration there have been issues about getting letters out. Some people may receive 2 letters, and others none. In different areas of the UK some letters have already been distributed and others are about to be issued.
If you need clarity that you are in the shielding 12 week self isolation the best contact would be your lung cancer team/ centre. However if you have difficulty getting through and need a confirmation of your absence from work your GP surgery should be able to issue via phone and email contact.
We are continuing to update our website with the guidance from the NHS and will be doing Frequently Asked Questions, so please let us know if the team if you have specific queries.
Please do contact our ask the nurse service by phone or email lungcancerhelp@roycastle.org
The prob with this is that I (as of Friday) have received conflicting advice from both my lung nurses and consultant...consultant saying not in the vulnerable grp as tki therapy does not compromise the immune system!! Concerned that my GP does not know the nuances of my treatment and I have had very little contact with them since my diagnosis over 1 yr ago.
Not sure if I should self register...not sure of the benefits except shopping and for evidence for work...
If you're at high risk, you will be contacted by the NHS by Sunday 29 March 2020. Do not contact your GP or healthcare team at this stage – wait to be contacted.
I've been updating another online patient forum and that is the gov.uk advice that 29/3 is the date then contact people but you can register online if you think you are in the vulnerable group and not received the letter/text. I imagine the GP surgeries (already overwhelmed) may face additional switchboard pressures so maybe better to register online if you don't get something by Monday (no post on Sundays) .
I am on Brigatinib and got a text this week. If you are ALK Positive which it sounds like you maybe with being on ceretinib, it might be worth you joining the U.K. ALK Positive Group. It’s on Facebook and has a website too. Some people on there have received a text others an email and others nothing yet.
Hi I got a text on Tuesday night GP ( I think because I am registered on NHS sight for GP appointments etc) and received a letter on Wednesday! I wouldn't worry too much if you haven't received them as it's basically just to offer you advice on shielding etc. As far as I know nobody has received a food parcel any way and I think they've scrapped that! The only other thing is help with getting your prescriptions but you can arrange via your pharmacist to do that any way. I wouldn't worry about it too much BellaBe. x
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