Crizotinib

[Mikest1]

Hi everyone

I am 55 months non smoker with stage4 NSCC

I have been on crizotinib all treatment for 4 weeks. I believe it's got a 60 percent success figure which is good. Does anyone know of anyone who found it didn't work for them and how long it took to find out? So far very minor side effects. I have a tumour blocking my airway to my right lung. My peak flow rate remains about 500. Not sure how long it should take to shrink the tumours?

Many thanks Mike

[Ailsu]

Hi Mike

There are some in ALkies support website are you ALK positive if so useful Facebook closed support group with lots of advice.

My daughter has been in it just started 4th cycle so far so good. Feels good, minimal side effects managing to go to University. Latest CT great results! Long may it continue hope u have same success

[Mikest1 in reply to Ailsu]

Hi Ailsu

Really pleased to hear its working so quickly for your daughter. I will try and find out how to join the closed alk group. Many thanks and keep us posted on your daughters treatment.

Regards Mike

[Ailsu in reply to Mikest1]

I can tell you it's Facebook ALK positive any problems accessing it let me know as very helpful, supportive group which will really help u

Aileen

[Mikest1 in reply to Ailsu]

Hi Aileen

I have managed to join the ALK positive group. Many thanks for your help. Regards Mike

[Ailsu in reply to Mikest1]

Talk to you on there you'll find it so useful x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Mikest1

There is some evidence that patients with ALK-positive lung cancer who respond to crizotinib undergo a relapse within a few years after starting therapy.see the link below

ncbi.nlm.nih.gov/pmc/articl...

However, the best person to answer your question would be the oncologist managing your care.He/she has the expertise together with members of the multidisciplinary care team and experience of other patients who have undergone similar management.

Kind regards,

All the team at the Roy Castle Helpline

[Odiehound]

Hi Mike. I've been on crizotinib for 15 months, so far, it's keeping it stable with minimal side effects. I had 4 rounds of chemo first which made no difference but bad side effects. I am a 47 year old non smoker. Have 3 monthly scans to check progress. Good luck. Jo

[Mikest1 in reply to Odiehound]

Hi Jo many thanks for your message. It's great to hear that it's working so well for you. I have just noticed that my peak airflow output has jumped into the normal range yesterday evening. It's still good today and managed 3 sets of tennis singles without getting breathlessness. I guess the tumour that blocked the airway to my right lung must be shrinking. All the best with your treatment. Regards Mike

[Mikest1]

Two weeks ago my peak flow reading jumped from 500 to 650! At present it has dropped back to 590/600 with 610 being normal for my age and height. I can only put it down to the tumor responding to the targeted chemo and shrinking back. I can now play singles at tennis again without the breathlessness I have had for the past 4 months. Having a follow up CT scan tomorrow and brain MRI next week. (the brain MRI was recommended by several others on the 'ALK positive' closed Facebook group, as the drug I am on does not provide much protection in this area. My oncologist decided I should have the MRI scan after I asked her about it.) Thanks to all for their support and advice.