Hi Arlene,
Very briefly recently I had to discontinue imatinib 400mg not because of pregnancy because of the potential conflict with another course of urgent treatment;my haematologist who is highly experienced took me through the process and reasoning and made the analogy with ceasing for reasons of pregnancy which he said happens quite often with CML patients.
As per the excellent advice given by Scuba and David the key issues outlined to me were:
-monthly PCR monitoring is absolutely crucial;please remember though that the PCR test takes a few weeks so one is always a bit behind versus other blood scores.
-it does help if ones existing scores are either undetectable or quite low and certainly with a PCR of less than 0.1 and the greater the time period that one has been in molecular remission the better.Studies of those that have discontinued or have stopped in the interests of trying to gain treatment free remission indicate that one has at best a 50 percent chance of holding that remission and not having to go back on to the tki so it would not be unusual to relapse.
-even if one loses the molecular remission one might still hold the haematological remission so that is another reason for monthly tests to see if the white cells score and neutrophils etc are holding up as normal;Scubas point about blasts is relevant as well.
-I was told that if I relapsed very rapidly I would be offered interferon alpha;I have read that the side effects can be like the flu but that the pegulated version is easier to tolerate.I suspect that it has to be given by injection on a regular basis.
-the monthly checks involve examination of the spleen checking all other bloods especially white cells and checking whether there are any symptoms such as night sweats or excessive fatigue.Pregnancy can bring about its own fatigue so that might be a difficult one to consider.
In my case I was off imatinib for 14 weeks and lost the previous molecular remission and now am with a PCR of 7.0 but haematologically we are fine ;we have resumed imatinib 400mg and if we are slow to regain the molecular remission we would be offered a dose of 600mg which would speed things up.
I am substantially fatigued but that is possibly a partial result of the radiation treatment that I had and not just the re- progression of the CML
I hope that this gives you some information to use when you next see your haema-oncologist to discuss.
Regards
John