First post, not sure what to write really but I figure "hello" is a good start. I'm 59M. You never have to ask a Yorkshireman where he's from... 'cos he's already told you
I have lung cancer that has metastasised to my liver, just diagnosed last month. Had a bad cough in November (didn't everyone?) and a "just in case" x-ray showed a shadow that has turned out to be cancer.
I'm on targeted therapy - Retsevmo - 3 days in, so too soon to know how it will go or what my side effects might be like.
I'd be interested to hear from anyone else on the same treatment.
Written by
Paul_S
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I’m on Retsevmo although I’m only 10 days in. So far ok only side effects a dry mouth. Blood pressure has to be watched. I’ve only had 1 review so far back again in 3 weeks then all being well will be 4 weeks then hopefully just a phone call. This drug has rave reviews, hard to find people in the UK on it, I’ve signed up for a Facebook group but 95 % are people based in the USA. Good Luck
I'm really sorry to hear that you have been diagnosed with lung cancer and are now about to start treatment. Retsevmo as I am sure you know this treatment is for a type of lung cancer that has the mutation RET.
RET is a rare mutation and good to hear that Sally789 has given you details of a facebook group, even if many members are from across the pond
We offer one to one telephone support or online support groups through zoom if are interested you can view and register for these through this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at ellen.knapp@roycastle.org
These support groups can be incredibly helpful for some people allowing you to engage with others on a similar path
RET is a rarer type cancer, if you are interested in sharing your journey or the experience of being a patient on treatment we would be happy to hear from you, more information on this can be obtained through this link: roycastle.org/get-involved/
Throughout the year we will be hosting patient information days across the UK, you can view our current ones in this link: roycastle.org/help-and-supp...
I hope you hear from others in the forum who are on this treatment and if you would like to discuss anything or have a chat you can call the ask the nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, or you can email us at lungcancerhelp@roycastle.org
Welcome to the group Paul. Lung cancer treatments have changed considerably since my diagnosis in 2011 when the only mutation tested for was EGFR which I didn't have and the treatments for that were only available on clinical trials. Since then there have been many new targeted agents to specifically target different mutations in non small lung cancer and other cancer types. In your case the treatment you're on is for RET mutations which are rarer than some other types. It is also used for thyroid cancers as well as some lung cancers. This booklet by Roy Castle lung cancer foundation about targeted therapies may answer some of your questions as with rare cancer types, it can be hard to find people with exactly the same type or treatment. When I was diagnosed at 52 I was told my type was rare although having been involved in lung cancer research since 2013 I've met many others told their types were rare too! maybe we're more inclined to seek out information about our conditions and what might be on offer...... Targeted treatments are often referred to as precision or personalised medicine and many have been developed and more in development all the time. good luck with your treatment.. roycastle.org/app/uploads/2...
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