Moving from Disatinib to Nilotinib

Hi everyone, I hope I am using this forum correctly and that you guys can see my messages.

My partner (26 years old) got Diagnosed with CML in December 2019, and has been following treatment on Disatinib for the past year. The doctors were really happy with his progress and were predicting for his BCR-ABLE results to be at ZERO by December. Come December, and the results not only had not gone down to 0, but had actually gone back up to around 5.5, so they have decided to move him onto Nilotinib. We are very aware thay he is in the early stages of his CML journey so were expecting bumps in the road, however the Heamotologist was really confident he was going to be down to 0, but there we are cancer keeps us on our toes…

My question to anyone out there who might be on Nilotinib is what their personal experience has been for them? My partner has been really lucky and experience very few side effects with Disatinib, so is worried about the changes this drug might have on his body. Any experience shared positive or negative will be greatly appreciated. As his girlfriend I do alot of worrying, and research really helps me feel in control and able to help.

Thanks for listening,

Amber

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Hi Amber, brilliantly posted.
I cannot help with your medical question but I just wanted to check in to see how you are doing as I was struck by your words about doing a lot of worrying.
We are also in Covid times.
I have to say I think that being a family member is one of the hardest roles in the world. You share what your partner is going through plus your own thoughts, feelings, practicalities etc. and I think that not being in control is so horrible, at the end of the day your partner makes his own decisions.
We are here to support you and the Blood Cancer UK support line details are above.
Have you got any support and how are you really?

@adaveyt05

Hi there Amber,

A warm welcome to our forum community! :blush: it’s so good to have you join us,

How are you and your partner? You sound so incredibly supportive of them and really proactive in trying to find out more about what this treatment plan may mean for them.
And how has it been talking about such matters with your partner’s treatment team?

Amber, you may find this webpage on Nilotinib here from Macmillan Cancer Support helpful: Nilotinib (Tasigna®) - Macmillan Cancer Support

As Erica rightly says, a blood cancer diagnosis can be just as trying on partners, family and friend too- and so we do hope you’re looking after yourself too.

Welcome once again! and please do keep reaching out for support,

Su

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Hi Amber,
I was diagnosed with CML in November 2019. I was initially on imatinib but it made my neutrophils drop too low, so I was put on a reduced dose. My BCR/ABL test results rose from 7% to 13% last June, so I was moved to nilotinib. My last blood test was in early December and it was 0.0003%! I’m delighted. I have no side effects from nilotinib whatsoever. I am sure your boyfriend will do really well on it. Good luck to him.
Best, Sally

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Hi Sally,

Thank you so much for taking the time to reply! Hearing how far you have come is really reassuring! Everything was going okay results wise until his BCR-ABL results when back up so it’s sent me into slight panic mode, but to hear how well you have responded to it following a similar process is really reassuring. I hope you are keeping well and managing to feel safe whilst shielding! Fingers cross Rob will respond in a similar way.

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Hi Amber,

Hope your partner is getting on ok with the nilotinib? I had ALL PH+ …I was great on that drug you will be glad to know! I suffered on imatinib and dasatinib so I was put on nilotinib. Luckily I am able to function on it and apart from hair thinning a little and achy joints the first wee while there hasn’t been any other side effects. I’m also in complete remission being on this.

Wish you guys all the best!

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Great to hear from you @Goody, it’s really helpful and interesting to hear how you are getting on, take care and stay safe.

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Hi @Sally and welcome. I think finding out lots pits you in control a little more doesn’t it. My husband was also really supportive e in a similar way and it really made a difference. Make sure you take care of yourself as well x

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So great that people get to share experiences. One of the many great things about the forum!

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