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Help with Nilotinib

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Hi Everyone,

I'm a 27 year old Rwandese recently diagnosed with Chronic Myeloid Leukemia (CML). After being initially diagnosed in Rwanda, I'm now in India seeking further testing and diagnostics as in my country, they couldnt perform the Bone marrow test.... My hemato oncologist here in India has classified me as a "High-Risk" CML patient given that my EUTAS score is 120 and my Sokal score is 1.2. While my doctors in Rwanda initially prescribed Imatinib for me (which I obtained for free last week through GIPAP Program in Rwanda), upon further examinations of my case and my High Risk status, the Doctor here believes that I would respond much better to Nilotinib. Unfortunately, Nilotinib isn't available in my country. Is there anyone else here who has gone through the same problem as me? I would love to get on the right medicines but I don't quite know the right people to contact; if it's either the government, Gipap or Norvatis.

Best,

Hi and welcome to our forum.  In deciding the proper TKI for initial treatment, it is important to consider a number of things:

1. what phase you are in - chronic, accelerated or blast - your blast cell levels should tell you that and these can be measured in the peripheral blood or in the bone marrow biopsy

2. Next, the bone marrow biopsy will tell specifically what breakpoint you have and whether or not there are any other mutations

3. Your current health and history - if you have preexisting heart conditions, it's best to stay away from nilotinib.  If you have a history of plueral effusions or pneumonia or other lung issues, it might be better to stay away from dasatinib

All of these factors should weigh into your doctor's decision on what TKI to initially prescribe in addition to your EUTAS and Sokal scores, which by the way, are not as useful or predictive as they were in the pre-TKI era.

I have been on nilotinib for 19 months and if I knew at diagnosis what I know now, I would have opted to start on imatinib because of it's more favorable long term safety profile. If nilotinib is the right choice for you, I know Novartis has various assistance programs. I don;t know anything about Gipap so cannot help there. 

Let us know what the outcome is - there are a lot of very knowledgeable people on this site that can provide sound support and advice.

Hi there, 

I can't claim to know anything about the Rwandan health service, but I can point you to the Max Foundation. 

https://www.themaxfoundation.org

The Max Foundation is an organisation who's mission is "to increase global access to treatment, care, and support for people living with cancer". They specialise in CML treatments - the "Max" in the name was a CML patient who inspired their mission. They help sponsorship and access to drugs, and nilotinib is on their list in Rwanda, as are all the major TKIs for CML. They may also be able to help with PCR testing.

Though they are based in Seattle, their reach is more global. I would suggest you get in touch with their South African regional office which covers the whole of Africa & the Middle East. I think you just need to select your country from the list in the form at the link below and your message will go to the right team. Alternatively, you could call them but there are only US numbers listed.

https://www.themaxfoundation.org/contact-us/

David.

 

Dear David,

Your response is very helpful. I just found out that, Rwandese have been getting the Imatinib through the Max foundation too. So, I believe they may be generous to provide Nilotinib as well. I just emailed them and I will call them tomorrow if I don't hear back from them.

Thanks alot,

Novartis partner with MaxFoundation and provide Tasigna (nilotinib) via the TIPAP patient access scheme. I am sure MF they will be able to help you get access.

Sandy

Hi there,

Thanks alot for your response,

I am in Chronic Phase. I have done the bone marrow biopsy and the doctor didn't mention any abnormal mutations.

I have realised that people have different opinions on what TKI's to take. The doctors in Rwanda are insisting that i take Imatinib while the doctor here in India is strongly recommending Nilotinib.

In your opinion, what criterias would you consider to take either Imatinib or Nilotinib?

I have never had any problems with my Heart condition or the other illness you mentioned.

Thanks alot!.

I would get each doctor to fully explain the reasons for their recommendations. There may be something from one or both of them that you do not know yet.

As a layperson with this disease, I have already told you what I would have done had I known when diagnosed what I know now.  I would have started on Imatinib.  Nilotinib is considerably stronger and will likely get you to MMR faster than Imatibinb, but there is no research that I have seen that proves higher survival rates for one versus the other.  Nilotinib also protects against certain kinase domain mutations that can cause resistance to imatinib.  BUT, many many people with our disease have been on imatinib for years and years with excellent response and imatinib has a better long term safety profile than either nilotinib or dasatinib. Imatinib is also available in generic form and therefore much less expensive than nilotinib. Finally, if you start on imatinib and don't get to MMR in 18 months or if you get there and then lose response, you can always switch to nilotinib or dasatinib then.

At the end of the day it is your decision to make, but remember that all TKI's have a high probability of success.  CML is a chronic disease, but with TKI's, most of us will likely die from something else.

Dear Sandy,

Thanks alot!.

I am now in touch with the Max foundation and they are incredibly helpful. There is a hope they can ship the drugs to Rwanda for me. I am very grateful.

Cheers,

I am really glad that Max Foundation can help you get access and support your case. They do good work in areas where there is limited access to  TKIs. I hope nilotinib is the answer for you. Please keep us updated.

Sandy