Crizotinib : Hi iv just started on... - The Roy Castle Lu...

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Crizotinib

Wiseowl1
Wiseowl1
20 Replies

Hi iv just started on crizotinib on a trial and at the moment on cyclizine for sickness...Just woundering if anyone has any views comments help ect on either...thank you...good luck to all.

20 Replies
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RoyCastleHelpline
RoyCastleHelplineAdministrator

Hello Wiseowl1,

it is good that you have been accepted for this trail, crizotoinib is a targeted therapy and in general has less severe side effects than chemotherapy regimes, below I have added a link to cancer research which will give you information on what to expect during this treatment.

cancerresearchuk.org/about-...

Cyclizine as you have said is prescribed for nausea and sickness, there is very good information in the links below about cyclizine and other anti-sickness medications.

cancerresearchuk.org/about-...*1su249i*_gcl_aw*R0NMLjE1NTYyODI2NTAuRUFJYUlRb2JDaE1JbFpmbXotVHQ0UUlWeVlqVkNoMWZjQTdlRUFBWUFTQUFFZ0lMV3ZEX0J3RQ..*_gcl_dc*R0NMLjE1NTYyODI2NTAuRUFJYUlRb2JDaE1JbFpmbXotVHQ0UUlWeVlqVkNoMWZjQTdlRUFBWUFTQUFFZ0lMV3ZEX0J3RQ..&_ga=2.3708086.769883396.1558430374-405329633.1480412464&_gac=1.7072262.1556282751.EAIaIQobChMIlZfmz-Tt4QIVyYjVCh1fcA7eEAAYASAAEgILWvD_BwE

nhs.uk/medicines/cyclizine/

If you wish to discuss anything you can call us on our nurse led helpline number Freephone 0800 358 7200

Kind regards

The Roy Castle Support Team

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Wiseowl1

Thank you...I'll take a look..

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Wiseowl1
Wiseowl1
in reply to Wiseowl1

Hi as crizotinib made me too ill they have taken me off the trial...just had 3ltrs of fluid drained at my local hospital plus other bits...and now possibly looking at alternative therapies..

Had my only 3 options available back in aprill 17 and last treatment with nhs October 18..so not sure of the drill now...

Any advice on either would be most welcomed..thank you :)

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Bow-19

Do you have the ALK mutation? I do and took crizotinib for 3 years 9 months. Some people who take it have the ROS1 mutation. There are ALK support groups on Facebook which are very good. One is a Worldwide one and the other a U.K. one. The U.K. one is alkpositive.org.uk and the Worldwide one is alkpositive.org both are worth joining. If I can help further please just ask any questions x

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Wiseowl1
Wiseowl1
in reply to Bow-19

Hi Bow...thanks for reading and replying...im still asking questions on what i am...think I'm classed as met amplification...basically lots of Alk baddies I think....on a trial and they are quite excited at what iv got..

Only started the tablet last Thursday so early days...

Early on did you have side affects?

How are you know Bow x

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Bow-19
Bow-19
in reply to Wiseowl1

Oh another mutation. The main side effects I had was nausea for the first year and I took metachlopromide?? which worked. I also had swollen feet and wore compression stockings otherwise I was ok. The swollen feet came on gradually over time. I am now on Brigatinib. I am having teething problems with it. I was diagnosed November 2013 and so am glad to be responding well to the treatments. I hope you respond well too xx

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Wiseowl1
Wiseowl1
in reply to Bow-19

Aaah thanks bow that's probably what it is..another mutation.

Yes sickness is getting me..bit of a pain when your on tabs..but after a week i seem a bit better organised regarding taking sick tabs ect..

You obviously now more than me from what iv read..

I go to see onc tomorrow and will mention first off the sickness see what they say...

Well done for getting this far bow and let's all get a lot further..keep in touch :) and thanks x

Reply
Bow-19
Bow-19
in reply to Wiseowl1

I used to take it at the same time each day 9am and 9pm. I also found it best to take it with food which I always did. If I was out I would take an apple with me x

Reply
Wiseowl1
Wiseowl1
in reply to Bow-19

Thanks...

I do 8..8..but ill try with food...

My first dose I had a bit to eat after and i didn't feel sick just zapped...Night time seems worse being sick at say11pm..

I'll give it a whirl :) x

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Bow-19
Bow-19
in reply to Wiseowl1

Good luck. I did try about 4 different anti sickness tablets before finding that metachlopromide worked for me. Cyclizine has worked with Brigatinib but didn’t with crizotinib x

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Wiseowl1
Wiseowl1
in reply to Bow-19

Hi bow...prof has put me on metacholpromide so hopefully they will work...

Hope your well x

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Bow-19
Bow-19
in reply to Wiseowl1

Just wondered how you are finding metachlopromide? Hope it’s working x

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Wiseowl1
Wiseowl1
in reply to Bow-19

Well I can now look in the food cupboard a bit more...so doing okay...

Hate the sickness feeling...you did well for 12mths....x

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Wiseowl1
Wiseowl1
in reply to Bow-19

Hi Bow... just looking at my sick tabs and noticed they are spelt metoclopramide...just woundering if they are the same....x

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Bow-19
Bow-19
in reply to Wiseowl1

Yes I spelt it wrong, definitely the same ones x

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Wiseowl1
Wiseowl1
in reply to Bow-19

Lol.....who cares about a bit of miss spelling ...we can blame the spell check thingie x

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Bow-19
Bow-19
in reply to Wiseowl1

I would also say that everyone is different in terms of side effects

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Wiseowl1
Wiseowl1
in reply to Bow-19

Im on cyclizine and definitely not brilliant..I'll see what they say tomorrow..thanks..

Have a good night Bow x

Reply
G2C1H1

I started crizotinib 6 weeks ago also as part of a trial. The first couple of weeks I suffered from fatigue, stomach cramps and constipation but now all fine. I just take Senna at night for the constipation. I'm ALK negative but have Met amplification and MET EXON mutation

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Wiseowl1

Hi and thanks for the info...as far as i know I'm met amplification...

Really good to hear from someone on a trial...great your settling on on it now...

Today my bloods are a bit?? Clotting But I'd left and was home so...nurse is going to ask prof about it but thinks all okay...

Good luck on your trial and if I can help please ask...and keep in touch...thanks

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