Trying to be hopeful

[BellaBe]

I’m 45 years old and was diagnosed with stage 3 lung cancer 19 months ago. I had a lobectomy and 12 weeks of hellish chemo which I would never put myself through again. Everything seemed fine for awhile but sadly yesterday my consultant informed me that the cancer has now spread to my other lung also. Apparently my cancer has the ALK mutation so I am being prescribed Ceritinib, with a view to buying me more time with my family. I was advised this could amount to a number of years. Does anyone have any experience of taking this drug? My consultant says the side effects are not as severe as chemo and won’t make me feel sick although I have read that nausea is a side effect of Ceritinib ( Zykadia). It does scare me as I had such a dark time going through chemo I know I couldn’t handle feeling that awful again. If anyone has any experience or advice I would gratefully appreciate it. Thank you.

[jillygirl]

Hello Bella, You have been certainly unlucky with the second cancer. I was fortunate that I had 2 cancers but surgery and chemo and all clear. I am sorry I cant help you about Ceritinib but i am sure someone will reply. I wish you all the best and sending good vibes your way. xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear BellaBee,

I am sorry to hear of your recent diagnosis.Remember that not everyone experiences all the side effects of ceritinib. The team managing your care will check you regularly while you are taking ceritinib, to monitor side effects and check your response to the treatment.

All the team at the Roy Castle Helpline wish you all the best.

[Mikest1]

Hi Bella

My best advice is to join the ALK positive facebook group as there is so much information on all the targeted drugs for Alk. There are many patients on it. There are also better drugs with less side effects than Ceretinib. See if you can get Alectinib as that's approved in UK as a 1st line treatment. All the best Michael

[Bow-19]

Please join our ALK Positive Group it’s a great source of support. It has a U.K. group for what’s happening here and a Worldwide Group with Research and people from all around the world posting on it. Try the web page alkpositive.org.uk

Wishing you all the best with your treatment xx

[Bow-19]

I am ALK positive and was diagnosed stage 4, 5 years ago. There are people on the site who have lived a lot longer than this. One lady 14 years, she was on the first crizotinib trials. There have been lots of advances in treatments over the last 5 years and lots of changes still happening for ALK Positive

people. It’s worth goggling Dr Alice Shaw and Dr Ross Camidge both in America and they are ALK experts. The Facebook group that Mikest1 and I mentioned is the best source of support specifically for ALK that I have found. It was set up by a nurse and her husband, she was ALK Positive and set the group up to provide Worldwide information, empathy and support to people who are ALK Positive xx

[Bow-19]

Just to say Roy Castle Lung Cancer Foundation also do a booklet about targeted therapies x

[BellaBe]

Thank you so much for the info, I will definitely look up the ALK group as I have heard lots of good things about it. It’s very encouraging to hear Bow how long you and others have lived with lung cancer and the ALK + Maybe there is hope for me after all. Still trying to get my head around the whole idea and just waiting for the paperwork to be sorted so I can start the drugs. Thanks again x