Newly diagnosed metastatic lung cancer - ALK

Hi Alix,

Just a quick message for you as I know what a shock the whole diagnosis is and all the thoughts as to what it may mean.

I was in a very similar position last June 2020, aged 46 diagnosed following a random blood clot in my ankle, despite having no symptoms the cancer had spread to my liver, vertebrae & a small met in my brain!

I'm EGFR+ (a genetic mutation similar to ALK+) and have been taking a once a day tablet for the last 14 months which seems to be doing its job. Since being diagnosed I’ve sought to educate myself as much as possible about the disease and treatment options, choosing to ignore any stats as by their nature they are pretty much out of date, it really is amazing the advances that have been made in lung cancer treatment over the last 5-10 yrs and personally I see no reason for that to stop, hoping that each new development is just a little ahead of me.

To date I have found this forum really useful to read, pick up information and see other peoples experiences etc, and I have gained some good re-assurance from this. Whilst there are a few members on here with mutations I have also joined a specific EGFR+ UK Charity Facebook group which by it’s nature is more focused and has a lot of bang up to date info and specifics around treatment pathways, potential side effects etc that I find reassuring being mutation specific. There is also UK ALK Positive Charity FB group which it may also be worth you looking to join as I’d imagine it will be similar in terms of specifics relating to your mutation and may provide some additional focused insight for you.

All the best

Steve

Thank you Steve - that’s really helpful. A lot feels very uncertain and unknown so I will definitely check out the ALK+ group as I think that will help me find others in my situation and bring me a little reassurance!

Like you I have no real symptoms for my cancer that had spread - I was just told I had a chest infection until doctors were more and more concerned I wasn’t improving and my lymph nodes were huge. I think due to my age and coronavirus it took a while to be diagnosed. 

Thanks again,

Alix

Hiya alix93 sorry to hear your bad news. I'm on tablet chemo called Osimertinib. On my 3rd day and so far feel OK. What's the name of your tablet ?

Hi Muffin break, glad to hear you feel okay - have you also been newly diagnosed? I’m on alectinib but I’m currently having to take a break due to low white blood cells. Hoping to be back on treatment soon!

Yes  7 weeks now, but had operation to remove tumer but they found it was to aggressive and had spread. I had to wait for my wounds to heal and biopsy results to come back before deciding what treatment I was going to go on. Scotchsteve was very helpful with his comments.