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results and going from Dasatinib to Nilotinib

Hi I'm relatively new to all this, having been dx Aug 2010 and on the spirit2 trial - on dasatininb. Initial results after I'd settled on the drug had been promising. However - went for my BMB result yesterday and all was not good. I'm hoping some other forum members can help me make sense of the figures and may have other helpful experiences to add, because I'm feeling a bit low and anxious that as this 'wonder-drug' hasn't worked for me, my prognosis may not be as good as I was beginning to hope...basically from the BMB they only got 4 metaphases, which all had the PH+ chromosome. my blood levels are all fine - so I've still maintained the haemotological response. My BCR/ABL was at diagnosis 71 - is this percent? - then 26, then 5.5 (december 2010) However my last one was 9. They tested yesterday for a mutation and now want to see me in a month. They are talking about repeating the BMB. My consultant has contacted another cml/spirit2 expert (steve o'Brien?) and possible ways forward are to change straightaway to Nilotininb or have a couple more months on dasatinib and then consider it. Does anyone know much about Nilotinib or have any comments?

Like I said, I'm feeling quite low today, as I felt that I was getting a 'new kind of normal' and feeling positive about the future, whereas at the moment, I'm worrying how treatable I'm going to be. My youngest boy is only 7, so it all feels a bit scarey at the mo.

i have been reading the articles about comparing one drug against the other, but wondered if anyone else has switched (and also so quickly) as well as pesonal experiences of side-effects etc. so all comments gratefully received!

Hello!

I'm sure you will get some answers about swapping drugs soon, but I just wanted to wish you good luck on the change.

From my reading of your comments, your consultant seems to be doing everything right.

Firstly, he's contacted Steve O'Brien, who is a seriously competent doctor at Newcastle, for advice. Dr O'Brien is one of the foremost experts in CML in this country and is very well respected. Why don't you ask to go and see him? I think it is really important to be in touch with an expert centre if your results start to wobble a bit. I'm seen in London at the Hammersmith, and the peace of mind I get from keeping in touch with them as well as with my local hospital is worth it's weight in gold.

SEcondly, they have run a mutations test given your results seem to be up a bit - if you do have a mutation, that should identify which one it is, and that will suggest which drug will be the most effective to treat you with, given that different mutations are sensitive to different drugs. Nor are they letting the grass grow under their feet, cos you've been asked to go back in a month to get the results. Super!

Lastly, I think they are talking about doing a repeat BMB because they only got 4 metaphases - that is a very low number  I think....normally they would be looking for 20 [I think].

I understand about getting a bit low - my own diagnosis nearly 5 years ago made me feel like I'd been run over by a bus!! Your positivity WILL return, just take things a day at a time, and an appointment at a time. Your consultant sounds like he's doing everything right, and certainly if he's asking Steve O'Brien for advice, then you're in good hands.

Take care and stay strong,

Janet xx

Hi, I do not have CML but my daughter was diagnosed with it 20 months ago, she is now 17.  She was put on Nilotinib at the end of November because she had become intolerant to both imatinib and dasatinib.  We have had to stay positive for her, but with each blood test and bone marrow check it is difficult to not worry. 

A couple of weeks after she started the Nilotinib her blood results started to head in the right direction, however a week before her second blood test on Nilotinib she was ill with a bug and the results were not very good at all and her consultant asked her permission to find a bone marrow donar as a preocaution.  So another two weeks after this test she had a bone marrow check, we had an agonising 2-3 weeks to wait for her results.  I can't tell you what a relief it was to be told that as well as extreemly good blood results, her bone marrow results were also heading in the right direction (at the moment for every 30 bone marrow cells, 20 are good ones and 10 are leukaemia cells) and she has also been told that she would not need the bone marrow transplant either.  (They have found a donar for her if she ever needs one!!)   Providing the Nilotinib keeps working her consultant is expecting her to be in 'remission'

Our daughter has had to grow up very quickly and deal with things normal teenagers do not even think about, her emotions have taken a huge battering with self-esteem and body image at rock bottom, but she seems to be climbing out of that big black hole, So for us Nilotinib is starting to give my daughter her life back, (it took about 10 - 12 weeks to start seeing signs that things were working).  And for that we are grateful. 

We feel that we are so lucky that her treatment is finally working and our daughter also feels this as she is starting to organise her future.  So far she has applied to college to retake her A'Levels as she has missed 2 years of 6th form.  She has started to learn the guitar - this was prompted after a trip to the Royal Albert Hall to see and meet Squeeze and The Feeling in concert with the Teenage Cancer Trust where she got to participate in a music workshop, now she wants me to pay for music lessons!!.  And she is slowly starting to get out more and see her old friends.

I hope this has helped you, we only had my daughters consultant to discuss Nilotinib as she was one of the first people in the East Midlands to be put on it.  The only other thing is that she has to take it at 8am and 8pm on the dot, and she can not eat 2 hours before taking it or 1 hour after taking it which is a pain if she wants to go out for a meal but she is prepared to put up with this. 

Sarah01xxx

Dear Sarah

I also have a teenager with CML diagmosed at 15. He's now just turned 19 and and changed from Imatinib to Dasatinb nearly a year ago due to side effects. He's managed to muddle through the GCSE and A level years and is currently enjoying himself on an Art Foundation course. He still has crushing tiredness and joint pains which do blight his life. He's managed to secure a place at art college to do a degree course this coming September. I can't but worry about how he will cope, not with the work but just having the energy to look after himself properly. Not that diffferent from any other parent with a child going to Uni I suppose. A transplant was also discussed in the early days post diagnosis but thankfully he responded to the TKI therapy where he remains in a good remission. I try not to worry too much about the future. At the moment he's having great fun throwing pots and making sculptures from almost anything he can find. He has a few loyal friends who accept him and his limitations without question. He also has body image issues and refuses to go swiming in a public pool anymore as he does not like his body. I've trained myelf to live for the day and try to forget the CML. He's still here and poised to make his own way in the world which is testiment to the fantastic drugs that are now available and the spirit and determination of youth. Its not easy seeing him in pain and having so much less energy than his peers but I can't change that. All I can do is be the best mum I can and be there for him just as I am for his younger brother. Thanks for sharing you story. It helps Bill to know that there are other teenagers with this condition and with the same kind of problems he has had. 

 

Thanks

 

Sarah

Thank you Janet & Sarah01 for your helpful and informed replies. It is good to know about other peoples experiences, treatment expectations etc. Thanks Sarah for your comments too - I hope all of you and/or your children continue to do well. I find this forum supportive and helpful and have had phonecalls and e-mails from my nurse which have helped too, so I'm not feelling so much doom and gloom at the mo. Hope you all get chance to enjoy the Easter week-end and the sunshine.

Jo :)