As I'm new to all this just wanted reassurance that everything is going to plan. I was diagnosed 4 weeks ago and been on imatanib now for 5weeks and 4 days and dr said I've met haemolytic response today. I was pleased to have met my first target and know such along way ahead just wanted to know is this about average when u get to this target!
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Haemolytic response
Lynsey, there is a lot of information on response in the FAQ section of this site. Click on FAQs on the list on the left hand side of this screen, them click Glivec FAQs and scroll down a bit.
The first thing it says is
"A hematological response (HR) includes reducing white blood counts to normal values, eliminating immature myeloid cells from the peripheral blood, and eradicating the signs and symptoms of disease" This sound pretty good after 32 days on Imatinib!
I'd recommend you try (over time) to get your mind round all the response levels in the FAQ section, so that you can understand what your consultant is saying, and ask the questions you need to understand your progress. One key thing you need understand is what percentage of your white cells had the abnormal gene on diagnosis - this is a key starting point for measuring progress.
How are you doing on side effects? There are people on here who have had them all - and have some interesting ways of minimising them, so do ask if you need to.
Best wishes
Alastair
Thank you I think I did ask a question regarding my percentage (as I had read people on the forum talk about it) and he said that they start everyone off at 100% and hope to get down to 0.01% is this what you mean? I have been very lucky with the side effects only felt nauseated once when I thought I could take it with a very small breakfast so therefore force myself each morning to eat a decent breakfast and I'm fine!!
Yes, those are the numbers you need to be aware of - I've not come across the rather broad brush approach they've adopted before, but 0.01% is very much a target very many are familiar with, and have achieved. 100% to 0.01% reduction is the "log4" reduction referred to in the FAQ information.
I take my Imatinib at breakfast as well, as its the easiest place for me to fit it into a routine. I only have nausea if I take it straight after drinking orange juice.
Where are you being treated?
best wishes
Alastair
I am treated in Glasgow. I'm still on weekly visits at the moment. Is the actual starting percentage very important? He said it can be anywhere from 50-200%.in the section of FAQ from what my understanding is that my 1st pcr reading to have an optimal response should be from1%-35% is that right??
Hi , welcome to this forum.
As Alastair has already said..you are well in line with the expected response in that you have achieved an HR within the first 4 weeks. So yes, be reassured you are doing well.
The next target will be a cytogenetic response - CyR. This can be minor, major or complete.
If you start with a baseline measure of the % of PH+ cells in your marrow (usually 100% or just under) over the coming months you will see a drop in that %.
A major CyR is what you should aim for within the first 6 months- (more than) >35% reduction in PH+ cells- with further reductions within 12 months.
Some people do take longer to achieve a CCyR, so don't worry if you are slower to respond.
If you need any advice over the coming weeks and months then do not hesitate to ask on this forum.
Glasgow is a recognised centre of excellence for the treatment and research of CML.
Very best wishes,
Sandy