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excuse me Dr but could you please explain?

I really wish they would explain results in more details. I've been on 400mg of Glivec for 4 years now. I had my check up the
other day and my result is currently 0.0003. I have no idea what that really means. Unfortunately my consultant was not in
and i saw a registrar. They all seem to be the same. You can tell they're new as they are lacking in social skills and haven't quite mastered
the 'two ears and one mouth' function to it's best ability.

I've avoided the bone marrow aspiration for three years as i don't see the point of them if everything is going well. I skirted around the issue
with my consultant last time but this guy was almost saying "You will have it done because we want to do it." I'm still tempted to tell them where
they can stick their needles but i know there is more reassurance to be had from BMB results.

Firstly congratulations on such a great result - I am sure there are quite a few people on here who would love to see those figures!

I cannot see why you would need an aspiration with those results, especially if they have not risen or given any cause for concern recently. I am sure that Sandy will offer further advice about this though.

K

Hi,
From your description of your 'communication' with your doctor/s it sounds like you might do better elsewhere if that is an option? You do have a 'right' to request at least shared care with a CML centre of excellence. It depends if that would be convenient for you but if your pcr results are correct at 0.0003% BCR-ABL then you are in a pretty good place clinically speaking. I wondered though whether your clinic sends your blood samples to one of the specialist Labs in the UK- and if so which one?

Regarding your decision on whether to allow them to perfom a BMB/BMA It might help to ask them this question. You do not say if the doctor you saw explained if there were other reasons why they might want to perform the BMB after so long (3 years). It is possible that they want to rule out other clonal abnormalities or some other reason- but you really do have the right to ask exactly why they want to perform this quite invasive test given that some CML expert centres no longer perform this test as routine.

I hope you can get your questions answered.

Just to reiterate: If your PCR test is performed at one of the expert labs in the UK- and it is 0.0003% then this means your disease is virtually undetectable and you might well be a candidate for one of the upcoming 'stopping' trials if you would like to try and stop for any reason such as your side effect profile.

I hope this answer is helpful,

Sandy

Thanks for both your replies and so quickly.

I attend North Middx Hospital which is only 10 minutes from where i live. I'd love to go to UCL but i don't know if i could go there.

I know they do some of the blood tests inhouse, but the special ones go off to Hammersmith. At my last apppointment back in September they asked for a BMB, but i said no. If the results were consistently good then surely i didn't need one. The consultant said okay and he'd run a special set of blood tests and if everything was fine with those i wouldn't need to come back in until my checkup in 6 months time. I was never called back.

My results have been that low since at least September 2010 when i spotted something on the screen. My gf thinks she saw 0.0001 on one occassion. She tried to take a sneaky photo, but it came out blurry.

With regards as to why he wants to do the BMB this Registrar said that's it's been 3 years so i am due one. He said my results are perfect but it's the best way to confirm everything is as it should be. It's not due until April 17th so i have time to change my mind. I am tempted to write a letter to my consultant asking for an explanation as to why they deem it necessary to do the BMB if i am doing so well.

I've been asking about the trial since last year. I was told AGAIN this time that they are not taking place anytime soon in the UK. Funny how this time last year when i asked about it i was told that with my results i could potentially be a candidate for it when they start.

You helped me out once before with your great knowledge, Sandy. I was here a couple of years back but lost the website details. I only found it again by accident the other day. I am so glad i did!

Well...I am glad you found us again!

If they send your PCRs to Hammersmith then you really are in a good place. Their lab has one of the most sensitive PCR methodologies in the world- along with Adelaide and Germany amongst a few others, so you can be sure that if your results have been this low for the last 3 years you really would qualify for a stopping or a dose de-escalation study.

Take a look at the summary (see one of the posts in red at the top of this page) of the last UK Patient Day in Glasgow last November for details of both DESTINY and SPIRIT 3 studies.
Both are delayed due to various bureaucratic hurdles but they are not likely to be delayed that much. We are expecting updates on at least one of them by the end of March. It's true that they are no likely to open in this quarter but I think that by the 3rd quarter of this year we might see something more positive.

Of course we are all watching this closely- especially the EUroSKI (Stopping Kinase Inhibitors)study which has already started recruiting in some EU countries. I was at a meeting in Berlin on Monday and spoke with a clinician there who aready had around 5 patients recruited to this study(Greece). Then there is STIM2 in France as well as industry sponsored trials that are due to open at some point this year in regions including Australia and the US as well as Europe.

I will keep this site updated about all the trials I hear about as they start recruitment.

There is a patient meeting this Saturday if you can make it as far as Hammersmith. Hammersmith Patient Support Meeting
Saturday 23rd March – 10.30am/1.00pm

Patient waiting room
Catherine Lewis Centre
Hammersmith Hospital
DuCane Road
London W12 0HS

Nearest tube: East Acton Free parking at the rear of hospital

Dr Dragana Milojkovic will attend to answer your questions and report on the latest from ASH Dec.2012

Please email: elizrees@gmail.com if you plan to attend so we have an idea of numbers.

I will try to get over there.

Criteria for most of the stopping trials is MR4.5 (0.0032%)held for 2 years or more.
You should really celebrate your fantastic response! Not many are at MR5 (0.001%) or below.

Once again, glad you found us again ;o)

Best wishes,
Sandy

Hi

Just wanted to remind you that everybody is entitled to a second opinion about their treatment. If you are not keen to ask your consultant to refer you then your GP can easily do this. Alternatively, you can ring your consultant's secretary to arrange to be referred onwards.

You sound like you are in a good place with your results but BMB's certainly aren't done nearly as frequently nowdays.

UCH has a very good haematology department as does the Royal Free (Hampstead) where I attend. I happen to know that there is no waiting list for haematology patients at the RFH.

You sound like you know what you want; just look after yourself and if a second opinion is what you want to feel more reassured then GET IT. You are being very sensible.

regards
Susan