Hi All,
I wonder if anyone else has had experience of being treated with high dose Glivec either 600mg daily or 800mg daily?
I was dx in February 2007 nearly ten years ago and probably had a high WBC score and platelet count and in addition tests for blood viscosity indicated an abnormal score;at the time I was in Thailand and in order to be able fly back to UK had to self inject with blood thinning agent heparin for some days and also just before the 12 hour flight otherwise the oncologist in Bangkok said you might not survive.Yes a total nightmare but I guess all of us on diagnosis experience life changing experiences.
I had private health insurance and the day after returning started on Glivec 400mg and all went well with bcr/abl scores reducing as per plan and eventually with an MMR and a log 3 reduction.At that time of diagnosis insurers were starting to treat cancers and some funded tkis and targeted biological therapies such as Glivec but in my case only for a year-so it was back to the NHS with the same specialist.All went well until mid 2014 when I was put on a six monthly bcr/abl testing regime rather than 3 monthly and then we had an aged/spoilt sample so there was a gap of about 10 months when we had no bcr/abl scores available.Then in mid 2015 there was spike in scores to 0.393 which effectively meant that we had lost our molecular remission .We considered going on to nilotinib but never did;it is a long story and would not be professional to expand on reasons why treatment was not offered at that time.
Because we had still kept up the insurance premiums, in late 2015 I asked the insurers if they would fund another drug such as nilotinib ;the response was that there had been an update of policy and they would now fund any tki including any licensed experimental drug- so were treated privately again..In August 2016 we found a new specialist and had mutations analysis (there were none)and then monthly bcr/abl tests.If there had been new mutations it would have meant moving on to dasatinib or ponatinib.So the advice from Hammersmith to my specialist was try high dose Glivec first then if that does not work try nilotinib.Three months on 600mg Glivec reduced the pcr/abl score down from a previous 0.255 down to a much reduced bcr/abl score of 0.033-so now we have regained our molecular remission and am in safe territory well below that magic threshold of 0.1.
The essence of my story is that it is not difficult to survive CML as long as it is controlled down below 0.1 level or log 3 after having achieved MMR but a score of 0.2 or 0.3 is too high and one is in a risky zone.
Some believe that 400mg of Glivec was somewhat underpowered compared with later tkis;600 mg is quite a dose and affects the body in different ways such as giving an elevated CK score and muscular inflammation termed myositis .The problem was that without a higher dose of Glivec or another tki there was substantial risk of progressing and transforming to accelerated or blast phase-bleeding gums and a swollen spleen would be the first signs of transformation..
So we will continue to use Glivec at 600mg for the foreseeable future in order to try to attain a deeper molecular remission say down log 4 or more.Our specialist has never administered 800mg Glivec and we would not want to go down that path.
Basically we have experienced secondary or acquired resistance to the first line tki for reasons other than new mutations but it has been addressed with a higher dose.
Has anyone else experienced secondary resistance to a tki and has anyone had experience of high dose Glivec? I am not sure if NICE permits the use of high dose Glivec under the NHS because of the additional cost-600mg is about £3000 per month without VAT I believe .N .B. Primary resistance to a tki would occur in the early stages of treatment whereas secondary or acquired occurs after a number of years of previous successful response and treatment
With best wishes
John