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Likelihood of adverse events

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Hi everyone

This is a bit of a strange question, and I'm not sure if I should even ask, but any advice would be helpful.

I live in South Africa and am on a private medical aid scheme that has different tiers / levels of membership.  Currently, I'm on the most expensive level, which has a large oncology benefit per year.  This was enough to cover the cost of the dasatinib treatment, the PCR tests and the visits to the doctor, with hardly anything to spare.

For various reasons, I switched to generic imatinib in May, and the cost is about 40% of the cost of the dasatinib.  This represents a major saving for me.  I am therefore strongly considering changing medical aid plans to a lower scheme, which provides an oncology benefit of half my current one, but which requires a significantly lower monthly premium.  The decision needs to be made at the end of the month and I have calculated that, barring any adverse events, this cover is enough to pay my imatinib as well as my haematologist visits.  I could really do with the extra cash every month!

My question is, therefore, whether I am likely to suffer significant adverse events that may require CML-related hospitalisation if I have reached MMR (my last result was 0.022% BCR-Abl)?  I fully understand that nobody knows what is likely to happen, but on the balance of probabilities I'm tempted to risk it.  From everything I've read, imatinib is regarded as a safe drug and MMR is a good place to be - I'm not sure what my chances are of something very serious (and CML-related) happening! Maybe it's safer to wait a couple of years before making this decision?

Any thoughts would be most welcome.

Thanks in advance and best wishes

Martin  

 

Hi Martin, a couple of questions. How long have you been in MMR - was losing MMR one of the reasons for your change? Apologies if you have written about that and I've forgotten. Also what dose of Imatinib are you on? If you are stable in MMR on 400mg imatinib (and I guess it may be too early to say) reducing to 200mg might also be an option, perhaps for consideration in advance of your next insurance renewal. If you decided to reduce the cover, and then had an issue, would you have an option to return to the higher level at your next renewal?

It is questions like this which reinforce my gratitude for the UK NHS, for all it's challenges.

Hi Alastair

Thank you so much for the response - I agree that you are lucky in the UK to have the NHS!  (Thanks also for your presentation on the Patient Day - I watched it live here in Johannesburg and it was so informative and interesting!).

To answer your questions:

1)  I gained MMR on dasatinib a year ago, but switched to imatinib because of an unusual side effect - swollen lymph nodes resembling lymphoma.

2)  I'm on 400mg and have discussed reducing the dose, but since I was a very slow responder on dasatinib (2 years to gain MMR) my doctor is definitely not considering any kind of reduction.

3)  If I do decide to reduce the cover, I can return to the higher level very easily, but this can only be done in December of every year.  So I have to weigh up the risk of getting adverse events that cause me to change to Tasigna (which is way more expensive even than Sprycel here) versus the cost saving of changing to a reduced plan (it's about 20% of my net salary).

I have also e-mailed my doctor to see what she thinks.

Best wishes

Martin