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Question on drug switching

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Good morning everyone

Yesterday I had my two-year follow-up appointment with my haematologist and I had two pieces of news, one good and one bad.

Good news: after two years, I have finally reached MMR for the first time with BCR-Abl having dropped from 0.12% to 0.05%.  I am overjoyed with this wonderful Christmas present and I mention this to reassure those slow responders that it remains possible to achieve MMR despite a slow initial response to the drugs.  Keep on taking the drugs exactly as prescribed and eventually every plateau will be broken!  I also want to thank everyone here on the forum, especially David, Sandy and Nigel, for their consistent support of a complete stranger in his quest for MMR.  Your kind responses meant so much to me when I was really battling.

Bad news:  I have had persistent issues with neck lumps on dasatinib.  An earlier post of mine details my struggles with significantly enlarged lymph nodes, fine needle aspirations, full excisional biopsies and so on, which started about 16 months into the dasatinib therapy.  I have no other side effects whatsoever.  In the last six months, a further four lymph nodes have become enlarged, evidently as a result of the dasatinib as they are reactive and not malignant.  So now the doctor has decided to take me off the dasatinib and is awaiting a second opinion on whether I should switch to nilotinib or imatinib.  This was the lump of coal to go with the wonderful Christmas gift.

I have three questions that I was hoping someone in the CML community could assist me with, please:

1)  Why do doctors typically discourage the switch from dasatinib to imatinib?  I know that imatinib is less potent, but I believe that in my case a lack of response is not the issue – instead, I need to change due to toxicity.  So I believe that there should be no problem with changing to imatinib, even though it may be viewed as a step backwards.  I greatly prefer the comparative ease of taking imatinib over nilotinib, and there is also a tremendous cost saving to me.  Is there anyone who has made this switch?

2) How difficult is it to maintain the nilotinib regime, and can anyone give advice on when is the best time to take the tablets?  I am thinking of taking the tablet at 10am and 10pm.

3) How tough is it, typically, to switch drugs?  I feel as though I’m pressing the RESTART button on a particularly challenging computer game, and as though these two years have been for nothing as I face a new drug, new side effects and new challenges of response.  It also scares me that I have failed one of the five available options.  Any advice would be greatly appreciated.

Well, everyone, it seems as though we have survived another year with CML.  I wish everyone here a merry Christmas, a happy holiday period and peace, prosperity and healing in 2018.

Best wishes

Martin

Hi Martin,

Sorry for the hurried response, but here's my quick take on things:

1. Switching to imatinib is generally not done because historically imatinib is where patients started. So the thought process just isn't there. I've had a few good conversations with my doctor around hitting CML hard with something other than imatinib, but them using imatinib as a sort of maintenance option. Her thoughts were to blast (excuse the pun) with ponatinib and then maintain with imatinib as maybe good for the patient and also good for the NHS purse. Not a massively thought out idea, but nonetheless there's no particular reason not to switch to imatinib other than dogma and entrenched ideas. There's certainly no acute medical reason.

2. Can't advise you on this one, other than I basically rejected nilotinib as an option because of this issue. 

3. Nobody knows. It might be easier for you than the old routine! It might be harder. In theory there should be little issue, but it depends if you go to (what is an unknown) a low side effect regime from a high side effect one, or vice-versa. My personal opinion is that people over-think it (including me, but this is my rational mind typing!). If it doesn't agree, you can always switch back. 

 

David.