You are here

Can CML be totally cured?

Does the CML actually get cured by treatment with Glivec? Cured, as in, goes away for good? or is it just managed and kept in chronic stage? i dont totally understand, and read conflicting things. :-(

Hello Weshlass,
As things stand at the moment, the only real "cure" for CML is a stem cell transplant.
Hopefully your doctors will have explained to you that this is the last line of treatment due to the dangers involved, that is allways assuming that you are lucky enough to have a compatible donor match.
What both Glivec (Imatunib)a 1st generation TKI, & Dasatinib & Nilotinib, 2nd generation TKI's do is control your bodys production of the BCR/ABL that causes your CML.
At your next appointment with your heamatologist ask what your BCR/ABL measurement is. Most people are diagnosed at 100%, but with a good response this should start to fall & come under control. You will allways have your CML, but will hopefully be able to lead a near if not normal life.
I hpoe this helps, & I am sure that other people will be able to explain things better if you need more help.
Bob

Hi Bob. thank you so much for your reply. that makes it much clearer. I will ask them that next time as they havn't told me any numbers or percentages of anything yet. And i never know what questions to ask them.
I am positive that i will still live a normal life. I was just wondering what the long term outlook was in terms of years.

Hello Welshlass,
I'm glad you found my post helpful. As far a the outlook in terms of years is concerned, as long as all goes well you should expect a normal life span.
I always make a note of my Haemoglobin, White blood count, Neutrofills & Platlets, when I see my haemotologist, & record them on a spread sheet, so that I can see what is going on.
When I have a PCR I make a note of that as well.
Bob

Hello Welshlass, I'm just wondering where you are from? Wales?? :-)

I am based just outside Cardiff, and have had CML for nearly 5years now - are you anywhere near me? There are a few more members in the principality who will pop up if you are near them, I'm sure.

Take care, Janet

I dont know what any of them are, they didnt tell me any numbers of anything at any of my appointments. they just said after 2 weeks on the hydroxys my white blood count had gone down a little so they were starting me on glivec.

Hi Janet, I live near Swansea, midway between Brecon and Swansea, in the Swansea Valleys lol.

Hello Welshlass,
If you want to email me @ bobosbo@hotmail.co.uk I will give you my phone number, or you can give me yours & I will be happy to talk to you at a convenient time if that would be helpful, & try & explain things to you.
Bob

Not too far away at all then, Welshlass! :-)

Here is my email address - dinasperrys@hotmail.com. If you are coming down to Cardiff, and would like to meet for a coffee, or if you would like to have a chat on the phone, drop me a line.

Janet x

hi bob. i asked my consultant on tuesday about my BCR/ABL measurement He said that he is only concerned with my WBC at the mo. he said it is too early in the treatment to be concentrate on the BCR/ABL measurement yet. I have been on Glivec for 4 weeks. my next appointment with him is in 4 weeks again.

i asked my consultant on tuesday about my BCR/ABL measurement He said that he is only concerned with my WBC at the mo. he said it is too early in the treatment to be concerned with BCR/ABL measurement yet. I have been on Glivec for 4 weeks. my next appointment with him is in 4 weeks again.

Morning all,

I was diagnosed last month went onto Hyrox for a short time to get white bloods down which dropped well and so start Glivec today, reading here and elsewhere the outlook seems alot better than 10 or so years ago so thanks i am sure you will all agree to everybody. Plan to come to Cardiff is this useful for a new diagnosis, and not to scary i hope my wife seems very nervous of attending. I am sure the same for all of us, but at 45 and really quite fit abit of a shock.

Plan to try to raise some money as well is there a CML charity as such or does it all come under Leukaemia ?

Heres to the Glivec first on today.

Nigel

Please take a look at the FAQ pages which will explain a lot of your questions... but to answer your specific question on survival and how long that might be- officially at present it is anything between 15-20 years and rising- or as bob has already said- any individuals normal life span. Put another way, the majority of those diagnosed in chronic stage PH+ CML will not die from this disease- as long as you adhere to therapy and take the correct daily dose of whichever TKI you have been prescribed. 

 

Regarding your bcr/abl levels... at this point you might ask your doctor the following:

1. What is the level of PH+ cells in your marrow. (most people are at around 100% some slightly less)

2. Is/was your spleen at all enlarged?

3. What is your overall white cell count? This will also be broken down into different white cells i.e lymphocytes,    neutrophils, monocytes, basophils etc... but you should only be concerned with lymphocytes and neutrophils. 

   your platelet count;

   your haemaglobin (HGB) level

   (Please go to the FAQ page on the main menu to left then click on icon with 'blood counts' which will give you an      idea of normal levels- and will explain what each type of cell does.

It might also help you to read the report from EHA (also on FAQ page) which gives an update on CML treatment and the long term outlook. Even if you do not understand everything, if you keep on reading and asking questions over time you will understand more and more.

 

I hope you will attend the Cardiff Patient Seminar- we are very lucky here in the UK to have such committed CML clinicians who volunteer to run this Seminar every year for the benefit of all UK patients. 

If you have any further questions then please ask.

Best wishes,

Sandy

 

 

I hesitate to say this, Nigel, but welcome to the club.  Everything is a shock - like you I was diagnosed in my 40s (two years ago, at age 42), always been pretty fit and no major ailments.  CML just happens.  I am sure like most patients you will do very well on Glivec - as you say, the outlook does indeed look much better.  And there are second and third line TKIs available/coming.  Don't be surprised if there are bumps in the road to begin with as you get used to Glivec - took me a while to get into a rhythm taking the tablets, so do take time to do that.  If you get side effects, and most get something, they generally get better over time.  Worst for me to start with was nausea but I have a routine now - food is the key.  Take it with or after a main meal - I find shortly after is better - not a snack. What is important is to take them since compliance is very important.

I've never been to a patient day simply because I haven't been able to - but I would say go, especially as a newly diagnosed patient. I think you and your wife are likely to find it encouraging and it will help you in the process of coming to terms with living with CML.  That takes some time and I'm still working on it. 

Re charity, people contribute in different ways to different ones.  I don't know where you are treated - I am at the Hammersmith, which is a CML specialist centre, and support their charity, Leuka.  Others support Leukaemia and Lymphoma Research.

Good luck.

Richard

Goes without saying cmlsupport needs support too as Sandy and David do such an important job advocating for patients and bringing the latest information.  An essential job! The other charities are research/treatment based, so worth doing both, if you can of course. I've got a lot out of it.

Richard

Thanks Richard for the reply and the advise, i am under Prem Mahandra who is at the QE Birmingham very good and heard good things of her, she was i believe at the Hammersmith prior,

Keep well and no doubt will be in touch some time.

 

Nigel

 

Richard thanks hope to meet Sandy and David at the patients day and have a chat, would be good to raise some funds for both, and sure we can Nigel

Dear Nigel, 

I would like to endorse everything that Richard has said... and yes, please do lets take time to meet up at the patient seminar. 

Do try to read as much as you can over the coming weeks... the FAQ page answers some of the questions you might have, but there is nothing like asking for specific advice from people who know- i.e CML patients themselves. As you have just started taking imatinib (Glivec) you might find that you need advice regarding common side effects, or on interpreting your blood test results. 

We are always here to help .. if we can.

See you in Cardiff,

 

 

 

Hi Sandy, yes thanks that would be good to meet up.

A question please, any reaction to Glivec, for most does this happen right away for after a few days / weeks ?

Just a note ( and this is meant the right way ) dropped you a couple of emails from the contact us page a week or so ago, not sure if you had them/link works if not worth checking ? Also and i don't want to appear daft, how do you navigate to this page we are now on, i came across it by accident via google, and have had to use the same route again. I tried to find it again last night via the blue / white links to the side here without sucess. Which of the links is it linked to please ?

Cheers Nigel

.

 

Hi Nigel

I got nausea the first day, and a fair bit just after taking the pill for a few weeks.  It passed in about 30 mins, and after a few weeks gradually it was less of a problem (only get it if I mistime taking my pill!). Other small things - muscle cramps, minor stomach upset, feeling of cold - gradually became apparent after a few weeks. Still get those but they come and go and don't really bother me.  If they get bad, speak to your doctor.  I've never had the rash, nor the eye swelling and only fatigue briefly.  Seems to have gone now.  Gosh, that all sounds a lot - but most people get used to it and in the end don't notice much.

The "blood " reaction was more apparent in the sense that my counts normalised over about 3 weeks. Some "overshooting" in that my neutrophils dropped below the norm at about 2 weeks I think then stabilised and recovered in about 4.  They will look at that sort of thing in the first few weeks of treatment - it's pretty common for some over reaction, usually followed by bouncing back. 

Richard