Stage 4 ALK positive Mutation - on Cr... - The Roy Castle Lu...

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Stage 4 ALK positive Mutation - on Crizotinib

AWibberley profile image

Hi - 53 years old with recent diagnosis above (5 weeks ago). Have just started Crizotinoib single cell treatment (started 3 days ago). Anyone had experience of this treatment? Have not wanted to know any timeframes as want to enjoy time with my young family and not sure I want a figure as yet.....

22 Replies

Hello, welcome to the group. I was diagnosed with stage 4 NSCLC ALK positive 3 years ago. I had general chemotherapy first and have been on crizotinib for 19 months now. I have found it to be great for me. I have swollen feet, so wear different footwear and I also get strobe type lighting in my vision when I go from dark to light at night. Initially I had nausea and vomiting so my dose was reduced and anti sickness meds prescribed.

If you want to ask me any questions please send me a personal message.

Best wishes

Hi there.

At the fear of repeating myself on this website, if you key Crizotinib into the search engine you should find quite a few replies ( mine included ) on the treatment.

For your information, I have been on Crizotinib for over 2 years and, in my case, it has been a life changer. I am not sure what other treatment you have had but by the time Crizotinib came along I had all but exhausted the usual remedies.

The thing I stress to people is that we have a managed condition and, as such, we will continue to take the drugs prescribed as long as they are of benefit. Fortunately, with all the fantastic developments in the cancer industry there is always hope that they will develop something suitable for most people. I know for a fact that there is another drug after Crizotinib that I may be prescribed should it's effectiveness wear off.

If you have any specific questions please feel free to ask but as I started off have a look at the previous comments on this drug. I hope you find it encouraging.

Take care

Colin

Bow-19 profile image
Bow-19 in reply to Lifesab

Colin,

Just wondered if you had joined the closed Facebook page for people who are ALK positive? About 280 people from around the world comment and the range of treatments is amazing.

Sally

AWibberley profile image
AWibberley in reply to Lifesab

Thank you Colin - I have searched and can see the information and am finding the website so useful and informative, as well as supportive. Thank you,

Mikest1 profile image
Mikest1 in reply to Lifesab

Hi Colin

Just wondered if you had a blocked airway like me from a tumour on node in my rh lung? Did the alk treatment get it clear? I am considering RFA treatment but so far only been on targeted chemo 3 weeks

Lifesab profile image
Lifesab in reply to Mikest1

Hi mike.

I'm assuming you are ALK positive ? I didn't have a tumour blocking my airway but I had several nodes affected within my chest and neck area. All of these responded to my taking Crizotinib. I've been on this drug for over 3 years now, fortunately with minimal side effects. Not sure if this helps. Take care.

Colin

Mikest1 profile image
Mikest1 in reply to Lifesab

Hi Colin

Many thanks for your reply. It's great to hear that you are on the same drug as me and that it's working so well for you. I was considering the RFA treatment as I play tennis and cannot compete at singles due to the blockage. Maybe there's someone else out there who also has a tumour on the airway. I am seeing the radiologist tomorrow to see what he thinks.

Lalk profile image
Lalk in reply to Lifesab

Hi how are you now? Is ctizotinib still working?

Lifesab profile image
Lifesab in reply to Lalk

Hi there. I had to switch to ceritinib early last year due to the fact a couple of tumours appeared in my brain. Gamma knife surgery resolved that issue but my consultant told me crizotinib didn’t act in the brain, hence the switch. So far so good on new drug if you count having the usual side effects such as nausea and occasional diarrhoea as the norm.

Hope everything ok at your end.

Take care

Terry56 profile image
Terry56 in reply to Mikest1

Hi Mikest1, I had a blocked airway and was given radiotherapy to reduce the size of the node plus started Cenitibib for my ALK a week ago. The process has worked so far and breathing is ok and no coughing ( especially when speaking!) I am sure your airway will clear as well!

Mikest1 profile image
Mikest1 in reply to Terry56

Hi Terry many thanks for your reply. Glad to hear that your treatment is progressing well. What stage was your cancer? Mine was 4 as was outside lung as well so they won't use radio only targeted chemo drug crizotinib. As it happens my lung blockage has just cleared after 4.5 weeks on drug. I remain hopeful but other's on the ALK positive group have advised me to get MRI scan on my brain just in case.

Terry56 profile image
Terry56 in reply to Mikest1

Hi Mike, I am glad your blockage has cleared, it makes a big difference! Good advice with the head MRI, I read that crizotinib does not work on the brain ( although Ceritinib does apparently) good luck moving forward!

Regards

Terry

Hello Sally.

No, I haven't. Not sure what it involves but when I hear Facebook I immediately panic......

Colin

Bow-19 profile image
Bow-19 in reply to Lifesab

Hi Colin,

I felt the same too. My partners daughter in law gave a training session in how to set up on Facebook and I only use it to access the ALKies page. It a closed page and so only people who are ALK positive and their carers can join. No one else can see the info. It's good as there are quite a few people from the UK and different treatments been given with trials etc. Definitely worth joining. If I can help let me know.

Sally

Welcome to the forum, as you can see it is a great resource for information, support and encouragement from the replies you have had.

If you are interested we have lots of information on our website roycastle.or and have a free nurse led helpline on 0800 358 7200

Wishing you all the best

The Roy Castle Support Team

Hi

My daughter Kay has been on crizotinib 3 months. So far so good attending University and lots of partying! She gets swollen ankles, minimal diarrhoea and mild sickness though some alcohol induced!

Her latest Ct scan no evidence of cancer in left lung and reduced tumours and reduced/ disappearing lymph nodes left!!! are you Alk positive? Kay will stay on this indefinitely or until it stops working then will move onto another ALK inhibitor. This will keep it under control until hopefully one day a cure will come.

Kay is now 19 and was diagnosed May 2016 age 17 .

My understanding is she will stay on this indefinitely only moving onto next drug if this stops working

AWibberley profile image
AWibberley in reply to Ailsu

Hi Alisu - your daughter seems to be doing so well x. Yes I am Alk Positive and there is a very supportive closed Facebook group if that is helpful. You can be signed up to as a carer of... I would encourage brain MRI's when on crizotinib as there is a risk and best to check all is clear. Unfortunately I discovered I did have two brain mets which have since been treated and are now being reviewed but many people fortunately don't have these, but definitely worth checking / discussing with oncologist. I have been on crizotinib now for 12 months :) xxxx

Ailsu profile image
Ailsu in reply to AWibberley

I am in that group and have worried about Mets but have discussed at length with gp. Not doing brain scan as no symptoms. As an optometrist I would only do a test based on symptoms a lot of people probably have undiagnosed brain tumours having never had chemotherapy. X

Hi Ailsu.

So pleased to hear that Kay is doing so well. If you read my previous comments you will note I've been on Crizotinib for over 3 years and still going strong. Similar side effects to your daughter with perhaps less alcohol influenced sickness and no swollen ankles. You are right when it comes to the effectiveness of the drug - I have 2 monthly consultations now and am always slightly nervous in case the drug has stopped working. I have been told that there is another drug that I can take should crizotinib prove ineffective. As I've said before on this forum, we have a managed condition that perhaps, one day, will be cured. Best wishes to you and your family.

Colin

Ailsu profile image
Ailsu in reply to Lifesab

Thank you - glad to hear crizotinib is working well for you. I hope the same for Kay as almost feels like life is nearly normal with the minimal side effects and less frequent hospital visits. Wishing you the very best x

Ailsu profile image
Ailsu in reply to Ailsu

And you x

Ailsu profile image
Ailsu in reply to Lifesab

And you x

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