I was on the spirit II trial taking dasatinib for over two years when i developed a pleural effusion. They changed my drugs to imatininb in january but I have developed a pleural effusion on this drug too.
I had an appointment today and my consultant has said he will discuss my case and come back to me over the next few days.
He mentioned a transplant which is really worrying me I am 46 with two children 11 and 13 and from what i have heard a transplant can be dangerous
Any advice please
jacqui
Hi jacqui,
I am sorry to hear you have had the same side effect on imatinib. I am still not sure why your doctor is not offering you nilotinib. It is available as an option and it does not have this side effect in its profile (to my knowledge) so before resorting to transplantation I would have thought he/she would have tried all the available TKIs first.
Unless there is a particular clinical reason not to try you on nilotinib? but I am sure he/she would have told you that?
If there is not a good clear clinical reason against you trying nilotinib (or one of the other TKIs in clinical trial- i.e ponatinib, bosutinib) and you are still refused, then if I were in your shoes I would ask for a 2nd opinion, preferably at HH with Prof. Apperley.
I am sure you are very worried about going to transplant but these days as there are so many options for CP CML then there has to be a good reason to resort to transplant. If you do have to then that is another matter and their are RIC transplants that are far safer.
Do you have access to your pcr results/muational analysis, etc so that you can at least make a better informed choice of therapy?
Best wishes,
Sandy
Hi Sandy
I agree with you about trying nilotinib, I have also read about cases when they manage the pleural effusion with breaks and duiretics . I would like to return to taking dasatinib and tryng to manage the PE as imatinib is making me feel really unwell and depressed.
My Consultant is part of a development team which I think is at Hammersmith and I beleive that is where he is referring my case, although he is based at Colchester
Thanks Sandy for your advice, I will see what he has planned for me.
Jacqui
Hi Jacqui
My story is fairly similar. Had to come off Glivec, couldn't tolerate Nilotinib and have had a series of pleural effusion breaks on Dasatinib. When i went to King's they wanted to go for a BMT but i asked to try a drug route so was referred to Hammersmith.
I now have Ponatinib at home waiting to go. The only reason I am delaying is that we are trying 70mg of Dasatinib to see what happens - so far the breathlessness has returned but more slowly BUT my blood tests seem to be getting worse so come the end of this month I may well be on the new drug.
I shall maybe see you at Hammersmith!
K
HI Karena
Can you let me know how it goes with dasatinib I did try for a short time a lower level but I think they should of waited for the effusion to go before i took it which they didnt
I have also read that some experts feel that there may be underlying causes why some people get PE and others dont i.e cardiovasular disease, have you had your heart checked.
What side effects did you incur on nilotinib as I think my consultant may well try this on me
I am going to look up ponatinib, as this hasnt been mentioned as an option for me
Thank you for replying, hope it goes well on dasatinib
Jacqui
My only advice is not to mess around too long with breaks from treatment- unless you have very low levels of disease- i.e MR 4, MR4.5 or MR5.
Dasatinib really is a difficult problem for people who exp. pleural effusion as a side effect, so if it were me I would not wait too long to try an alternative- either nilotinib or one of the other drugs in study.
Re: Ponatinib.
According to data, ponatinib is looking like a really exciting alternative if you can get on the study.
Just to update on how many TKIs there are currently in clinical trial:
Bosutinib (alternative to dasatinib/nilotinib)
Ponatinib (data I have seen looks very good- also deals with T313i and looks like it is effective in Blast and PH+ ALL)
Bafetinib (Abl/Lyn inhibitor- one to watch)
Then there are other alternatives such as:
the synthesized form of Homoharringtonine (a chinese herb) I think this is given intravenously.
Combination of TKi until MMR then maintenance with pegylated interferon to maintain MMR (generally the German study groups)
Reduced Intensity Conditioning (RIC) SCT combining TKi for 12 months post transplant with DLI after that to effect a 'cure'- this is the kind of SCT I had at HH in 2003- I think QE Birmingham are now doing this protocol using nilotinib rather than imatinib)
Whatever choices you have, remember it is essential that as a patient you are fully informed.
I hope you can overcome the PE problem and get on with effective treatment of CML,
best to you both,
Sandy
Hi Sandy thank you for all the information
My consultant has just called me after speaking to Professor Kavenee (Ithink he said)
They are going to do a Tap on my lung to get some fluid followed by a CT Scan and then put me on Nilotinib
Im hoping the Nilotinib doesnt have a PE as a side effect
jacqui
Hi Jacqui
I hope your new treatment is going well and you are feeling a bit better. I have realised that you come from the same town as me. I was diagnosed 2 months ago now (seems ages ago!) and would be really interested in having a chat with you as we go to the same clinic. I am also on the Spirit 2 trial and taking Imatinib, which seems to be working very well although it does make me feel quite tired and sick. If you fancy having a chat let me know and i will give you my contact details
Regards
Julie
Hi Julie
It is nice to hear from someone who is local to me. Would love to meet up my mobile number is :::::
Jacqui
Note: for your personal protection please do not give out personal phone numbers on this site. It is an open access site and personal details can be read by anyone, anywhere. We do take data protection very seriously which is why we do not give out personal contact information on this website.
If you wish to contact another member of this forum then please email cmlsupportgrop@gmail.com and I will put you in touch by email
Thanks, Sandy
Hi Jacqui... don't worry it is very easy to forget that this is an open access site. many people throughout the world read it (average number of individual visitors is upwards of 6500 per month which is pretty staggering). Most are CML patients/family and friends or those with an interest in CML etc, but there are others too.
It is just a precaution but a wise one I think.
I am always happy to put people in touch with one another- after all that is one of the reasons that we are here ;o)
Hope all goes well,
Sandy
