I was diagnosed with ALK positive lung cancer.

Welcome to the group Hoa but sorry you have to join us here. I hope you are doing well on your treatment ? 

Thanks for your reply. It’s very hard to live with incurable cancer. I think my lung cancer tumour might be feed by the estrogen as well but how can I make my oncologist take it in the information. I told my oncologist when I was first diagnosed in April 2023 that during my menopause my gynaecologist prescribed local HRT which was estrogen cream I used it three times a week and I had been using it for 4 and half years. My oncologist said my lung cancer was caused by the ALK gene mutations. The good thing is you don't get resistance to your  antihormonal drugs. 

ALK-positive non-small cell lung cancer patients can get resistance to one of Target therapy drugs. At the moment there are only three to four-line drugs I started the second-line drug and I hope it can control the gene and not mutate for a couple of years. 

Thank you in advance for all your support. 

Hi Hoa, I too have been diagnosed as ALK+. It’s a difficult situation. There is a lot of information and support on the ALK+ Facebook groups. Do take a look, you may find it helpful.

All the best!

Hi, SoniaK, thanks for your reply. I also have joined the the World ALK positive and the ALK positive UK. 

In addition to ALK+ UK I also joined Alkies Unlimited.

Wishing you all the best in this journey 

Hi, ive also got ALk+ NSCLC. Never smoked so was a complete shock. No idea how or why I’ve got it and will probably never know. I’m stage 4 and been on Alectinib now for about six months. It has shrunk my tumour massively- was originally about 12cm in length and I struggled to see it on the last scan. The drug has side effects, primarily for me is fatigue which seems to be getting worse as I feel I need a 20 nap every afternoon now. Still if working nothing to complain about. 

A diagnosis of this type is difficult but best of luck with the treatment. 

Hi Whittle, I agree, it’s an absolute shock. Good news is that you have received a diagnosis and medication plan! As I have written above, there’s lots of information and support online which I have found helpful.

All the best, SK

And that is the big myth around lung cancer, that it is a smokers cancer. Yes smokers can get lung cancer, but so can non smokers. As my oncologist once told me, anyone with lungs can get lung cancer, it’s as simple as that. 

Great to hear your treatment is working well Whittle an afternoon nap is something that has crept into my daily schedule as well.