Consultation

Hi Maria, 

There's absolutely no need to wait until results are not detectable to reduce dose - never mind stopping altogether. If fact, as machinery becomes more advanced results that would once have been undetectable are now detectable so to hold off only on that basis doesn't make sense.

0.005% (assuming that is on the International Standard) is as near as makes no difference MR4.5, which is to say it's a deep response. It's an entirely appropriate time to consider reducing dose. For what it's worth, my results are at very similar levels and I am in the process of reducing my dose. Already down from 100mg to 70mg of dasatinib, with another reduction (hopefully) on the horizon in the next few weeks.

I imagine a specialist nurse will be much more cautious than a CML specialist consultant. However, that doesn't mean you should accept their answer particularly given your husband's tolerance issues. You could ask for "shared care" with a CML Centre of Excellence, where you would periodically see a haematologist who specialises in CML and would be able to make a much better informed, modern opinion. With excellent results like your husband has, he should not have to suffer when there ought to be avenues open to him to help.

Out of interest, do you know where his PCR tests are undertaken? For example if they were sent to Newcastle, that could be an option for specialist shared care.

David.

Bloody hell! There's absolutely no need to 6 monthly bone marrow checks! I'm glad they've put a stop to that for him. With his results, there should be no need for any at all.

Glasgow has a leukaemia centre of excellent. I'm not aware of others in Scotland. Perhaps you could look into shared care there? 

Here's the contact detials: https://www.cmlsupport.org.uk/organisations/university-glasgow
 

David.

Maria, 

You might want to follow David's advice and contact Paul O'Gorman Centre Glasgow...

Prof. Mhairi Copland. 

Professor of Translational Haematology and  Honorary Consultant,
Director of the Paul O'Gorman Leukaemia Research Centre and Head of Experimental Haematology,
College of Medical, Veterinary and Life Sciences, Institute of Cancer Sciences
University of Glasgow,
Gartnavel General Hospital,
1053 Great Western Road,
Glasgow G12 0ZD
Tel: 0141 301 7881 (Secretaries Diane/Angela 7880/7896)

That’s great to hear, Maria. Keep us updated on how you get on. I hope all goes well for your husband and you. 

David.

I started on Tasigna 600 mg/day 18 months ago. I had a series of very bad and very unusual side effects, so once I hit MMR (.1%), we began to reduce my dose, first to 450, then to 300 and finally to 150 mg/day about 6 months ago. My PCR continued to get better and have now been at <.003% or better for a year.  So, there is absolutely no reaSON WHY YOUR HUSBAND SHOULD NOT BE ALLOWED TO start reducing dose.  In my case, I had to be tested more often following dose reductions, which makes sense, but it was well worth it. 

Also, take a look at the Destiny trials which provide specific criteria for dose reduction - your husband meets those criteria I believe - good luck

So Robert is trying cessation and not dose reduction? Whatever the case, please keep us informed. We'll be keeping our fingers crossed

Will do, hopefully starting tomorrow