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Dasatinib and Pleural effusion

HI Everybody

 

Feeling a litle low as I have had a pleural effusion which took nine weeks to disappear while off Dasatinib.

Dasatinib was re-introduced at a lower dose of 80mg 4 weeks ago.  Although i was feeling fine and certain that the pleural effusion had not returned, I was shocked today as the xray showed it had returned and my lung was filling up again.  I was then told that I could not take dasatinib anymore and will have to take imatinib.

My PCR was down to 0.003 before christmas but it has risen to 0.011 on my appointment in January.

I feel like I did when i was first diagnosed over 2 years ago..

 

Has anybody else experienced this on the forum and what side effects can I expect from Imatinib.

Hi Jacqui,

I am sorry to hear this serious side effect has returned. Why do you only have imatinib as an option? Can't you take nilotinib?

If nilotinib is not suitable.. have you/your doctor considerd a clinical trial of one of the other TKI's...i.e bosutinib or ponatinib?

Sandy

Hi Sandy

 

I am under Colchester Hospital.  I did ask my Consultant whether I could have anything else apart from Imatiinib but he said this would be the route he wants me to go down and if this does not work out then we have one other alternative  which he said nilotnib  He did not mention bosutinib or ponatinib.

 

I like my consultant very much but I felt quite powerless and there were a lot of people in the room at my appointment which I presume for training purposes.

 

Jacqui

As far as I am aware the ponatinb trial recruitment has now closed. However it could be possible to get it from a hospital running the trial on compassionate grounds, such as the Hammersmith. That's how we've got round it for me :) Good luck Jo

Hi Jacqui , I have been on  imatinib since January 2009 ,side affects i have had are puffy eyes, cramp in hands and feet, have had eye bleeds, but not for the past 6 months, like you last march started to get a little out of breath  when doing something rigours .i did tell my consultant, he did not seem that concerned, has stayed more or less the same, but will mention it again at my next appointment.I do  work full time fitting composite doors weighing on average 60kg. I take my tablet at 6pm and that works for me, anyway good luck on the imatinib ,

                                                                              Regards tony morgan.

 

Hi, I have been taking Imatinib since September 2003 and don't really have any nasty side effects - just the usual puffy eyes, a few eye bleeds and a bit of tiredness, also cramp for which I take Quinine. At the start I sometimes had a dodgy tum and some 'bone pain' in my forearms but they soon settled down.  I am quite happy on this drug and until this changes, I think it's better the devil you know.  I have been going to Ipswich since January 2010 and am happy with the care I have been getting, previousy I was under the care of Farnborough and Kings. Hope things work out for you, pam

Hi jacqui.... I am suprised your doctor takes this view. Imatinib is a good drug but comparing it to the 2nd generation TKi (dasatinib) as the 2nd line choice seems odd. Nilotinib is the other 2nd gen TKi and would be the natural next choice in my view..... but then he/she obviously has a reason to suggest imatinib - it can't be price because nilotinib has a recommendation by NICE as 2nd line - which by the way imatinib does not have. It has never been appraised by NICE for 2nd line use. So I am puzzled- although your doctor might not be aware of this. You might mention it as the pharmacy might take the view that they cannot supply imatinib for 2nd line use and may suggest nilotinib is the only choice, outside of clinical studies. 

I hope you are able to get the therapy that you want-

Best wishes,

Sandy

Hi Sandy

 

That is very helpful information - thank you it gives me something to fight with!!.

Although, do you think they are able to give me Imatinib because I was on the Spirit 2 .Trial,

Jacqui

 

Thanks Jojo, I will ask at my appointment Tuesday week

 

jacqui

Hi Tony

 

Im glad the side effects arent too bad,  Puffy eyes I am used to Dasatinib - spent a fortune on eye creams!!!!

Have your PCR results been good on Imatinib??

 

Jacqui 

Hi Pam

You must live in my area, sorry i am presumiing this as you are under Ipswich and I am under Colchester.

 

I felt like that about dasatinib (better the devil you know), I supoose that why I am a little scared at the moment.

I was getting so close to being in the zero club with dasatinib - I am feeling really disappointed.  I suppose I wont know what side effects i am going to expereince with imatinib - although most people talk about the puffy eyes

My consultant works very closely with Hammersmith and cambridge, so I feel quite happy with him but but I am praying his decsion to give me imatinib rather than nilotinib is right.

 

Jacqui

Hi Jacqui, I do live in Ipswich having returned here in December 2009, after living in north Kent for 35 years.  I acheived more or less zero in 2004, after my dose of Imatinib was increased to 600mg per day, which is what I still take.  I've never got to absolute zero this has always evaded me, always recording 0.00 something, but I'm happy with that.  Best of luck with your appointment next week, if you need to chat let me know, pam

Jacqui.... yes this might be the case. ...i.e if you received dasatinib 1st line because you were on the SPIRIT 2 trial this might get around the issue of IM as therapy in second line.

I think you need to push the fact that to go from a 2nd generation TKi to a 1st seems counter intuitive, and ask for a full explanation of his/her thinking on why you should do this. IM is no cheaper that NI with the PAS so it must because he/she is being overly (?) cautious. Both 2nd gen TKis have strong data which indicates that they are a clear improvement on IM.

 

I hope you can find a way to  convince your doctor- maybe a request for a 2nd opinion? Delicate I imagine!

Good luck,

 

Sandy

  Hi Jacqueline sorry been so long in getting back daft as it my seem ,l go every three months to Wolverhampton haematology blood taken weighed sit down with my consultants assistant ,she says everything ok I say yes happart from the odd bout of cramp ect,she says your bloods are fine full molecular respons , I feel sometimes ignorance is bliss,and since you have asked next time I will fined out,sorry for all this a simple don't know would have done. 

                             All the best tony Morgan.

Hi Sandy

 

I had my appointment on Tuesday and the Consultant has given me Imatinib..  The reason he explained is that they just want to keep me below 0.0 etc using imatinib.  Then if this drug becomes a problem to me they will have nilotinib as a reserve drug.

 

Took first tablet on Tuesday - had the usual side effects aching itching and insomia but hopefully these will settle down.

He didnt mention that I had any other options of other drugs

Jacqui