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Hello everyone

I just want to start by saying thank-you for this site and for everyone who posts as it has helped me since being diagnosed in Jan 2013. I am 35 years old and it came as shock to me to be given the news of having CML as it would have to done for anyone.
I was put onto Imatinib straight away and in September I was told that Imatinib was ineffective. My counts had reduced but my BCR was not reducing as much as the hospital would have liked. I was referred to Kings in London and I was then placed on Nilotinib. I was told by my specialist that if my BCR was not coming down significantly a review would be done. I recently went to see my specialist after 5 weeks on Nilotinib and my BCR has come down to 39 from 69 but I have been told this is not as much as they would have liked. I will now go onto Dasatinib for 6 weeks and if my BCR does not reduce below 20 then a stem cell transplant would be considered and most probably carried out.
I have a sibling donor so I am grateful for this if the transplant is carried out.
I have a couple of questions: has anyone else had a similar experience with the first 2 TKI'S not being as effective as they could have been? Has anyone remained on these drugs longer and seen a reduction to below 20 and over what period of time? Has anyone had the mini transplant (this is what they may carry out) and can tell me pros and cons post transplant? Do I ask to stay on the 2nd Gen TKI'S for longer and see a gradual reduction in my BCR?

I have up and down days as I worry about long term effects of the transplant to my quality of life.

Thank you for reading my post and I look forward to reading about anyone else's experiences.

Thanks

G

Hello G,

There are a few points I would like to make.

According to the 2013 update of ELNet recommendations for optimal response to TKI therapy, your initial response to imatinib would have shown either of the following results at 3 months from starting therapy:

1) a reduction of PH+ cells (from a baseline at diagnosis) to at least less than 35% PH+ cells by cytogenetics/FISH tests.
OR
2) a major cytogenetic response of a levels less than 10% BCR/ABL by Q-PCR molecular testing.

From what you say your blood cell counts (white cells, platelets etc) did return to normal but your PH+ cells did not reduce to a low enough level. Therefore at 8 months after starting therapy with imatinib you were changed to nilotinib. This has had some effects but after 5 weeks your PH+ cells are still around 40% (39).

Obviously your doctor is being proactive and dasatinib might - in your case- be more effective than nilotinib at reducing the PH+ cells to a safer level. Ideally you would like to see them reduced quite quickly to 1.5% or lower and then go one to see a further reduction of BCR/ABL (the abnormal fused gene) down to at least 0.1% in the coming months.

There are currently 5 TKIs available depending on your disease profile and where you live. Some people have been treated with 2,3,4 and in some cases even 5 TKIs.

Apart from dasatinib, there are 2 other TKIs that might be available to you:

1) Bosutinib is proving to be a good option for some and is available (in England through the CDF (cancer drugs fund) for chronic phase CML patients showing resistance to nilotinib OR dasatinib and/or intolerance to either of them.

2) Ponatinib is only available (in England) via the CDF for people with the T315i mutation, or for compassionate use when there are no other suitable options. Clinical trials have stopped recruitment.

Reduced intensity stem cell transplant- often called mini-transplant.

If you have a well matched donor (pref. sibling and male) and have access to a centre of expertise - i.e one that perform many transplants- then this is potentially a life saver.

I had a successful RIC SCT in 2003 (sibling donor)at Hammersmith Hospital when I developed resistance to imatinib (before other 2nd G TKIs were available) You can read my transplant diary on the 'blogs and journals' page here:
http://classic.caringbridge.org/europe/sandycraine/

I must say that if I had had the choice of that or TKi I would have opted for another TKI but, in the end I was able to enrol in a study that used RIC SCT + imatinib for 12 mths after transplant + Donor Lymphocyte Infusions after imatinib was discontinued.

This protocol is a safer and less challenging option.

If you have any further questions about SCT options after you have read my diary then please ask.

I do hope others will respond to your questions regarding therapy with more that 2 or 3 TKIs.

Try not to worry too much until you can assess your response to dasatinib. It may well be 'the TKI for you'... if not bosutinib my do the trick.

Hope this helps

Sandy

Hello

The good news is you are being treated at a centre of excellence and the care you are getting will be second to none but I would push to try all the available drugs prior to going for a transplant. I have been on all of them and have never hit any of the target guidelines for pcr results however on the last two: Ponatinib and Bosutinib my counts have finally begun to drop. Six weeks does not seem long enough as a trial for Dasatinib but if that doesn't work for you I would ask to try Bosutinib at least for the same amount of time to see if you can improve your results.
The fact that you have a sibling donor is a big plus but as many here will testify a transplant is not an easy option.
Good luck and keep us informed.

K

Thanks for you detailed replies. I will keep you updated with the test results of Dasatinib.

I feel a bit better I have been able to read more experiences from bloggers on this site.

Thanks

G