New Member/Anyone in Surrey??

Hello Angela,

Welcome, I'm glad you found us quite early on - the reason i say that is there can be some misinformation about CML on the internet and it can very misleading, especially in the early days following diagnosis. The good news is you're on an excellent medication (I'm on Nilotinib too for almost 4 years now) and the outlook is very positive; assuming you hit the major treatment milestones (Complete Cytogentic Response [CCyR) and Major Molecular Response [MMR]) you will probably live a normal life span commensurate with the rest of the population. The other excellent news is, if for some reason you don't get on with Nilotinib, there are other similar options your doctor can prescribe - it's not a one-shot only medication.

People on here are happy to answer any questions you may have and we all know the early days are the most scary as you adjust to what will become your 'new normal'. As time goes on you will become more comfortable with CML and the (relatively minor) impacts and limitations it imposes on your life.

Unfortunately, I live in the South West but I know there are patient meetings at Hammersmith which you might find useful. Also, have a look towards the top of the forum page for the 11 Oct CML patient and career day Link: http://www.cmlsupport.org.uk/node/8308
I find these really useful and well worth the journey, particularly in the early years following diagnosis.

Any Qs, please ask...

Chris

Hello Angela

You will indeed find plenty of information on this site. I'd just like to recommend a book by Jessica Wapner, an American scientific journalist, called The Philadelphia Chromosome, published a couple of years ago. It is fairly technical in parts, but it tells the story of how CML was first discovered, and the long process of developing drugs to treat it. I'm no scientist, but I found most of it understandable, as well as very moving and encouraging. It taught me more about the disease than any of the rather dry technical reports you can find on the internet.

I agree with you about the term "carer" - I certainly don't need a carer, after nearly 5 years with CML - but what do you call someone who might come with you who is not necessarily a spouse or partner?

The first few months are indeed scary, but as you keep on with the pills and begin to see results, it does get easier.
Good luck
Olivia

Hi Angela and welcome,

As Chris and Olivia have already said... things will get better for you over the coming months and you will eventually understand the clinical terms and acronyms.

I would also recommend Jessica Wapner's book 'The Philadelphia Chromosome'.... maybe a little down the line as you become less panicked and more confident that TKI therapy will work for you as it has done for thousands of others.

The Ph+ cells in your peripheral blood have obviously been dealt with very well by nilotinib- I assume you are taking 150 mg twice a day (total 300 mg daily)? Nilotinib is a 2nd generation TKI (alongside dasatinib, bosutinib and ponatinib) and recently published data from studies of this TKI in newly diagnosed chronic phase CML shows that it is very successful in getting a fast and deep molecular response... in other words as with the other drugs I mention above, it hits the Ph+ cells hard and fast- which is the most effective strategy for long term survival and control of the disease.

Just to answer your question about the various acronyms you have come across.

CHR - Complete haematologic response (only normal cells now seen in the peripheral blood)

MCyR - Major cytogenetic response - (Ph+ cells have reduced to 35% or less in the marrow)

CCyR - Complete cytogenetic response - Ph+ cells are no longer detectable by cytogenetic/FISH testing, and molecular testing by qPCR show the abnormal gene called BCR/ABL1, (the fusion gene responsible for causing CML and found in cells positive for the PH+ chromosome) has reduced to less than 1%.

MR - molecular response - the fusion gene BCR/ABL1 has reduced even further towards 0.1% (this level is also referred to as MR3 and/or a 3 log reduction from 100% Ph+ baseline at diagnosis - a reduction equivalent to a 1000 fold)

MRD - molecular residual disease- this is what most of us live with, preferably with % of BCR/ABL1 at anything from 0.1% to 0.001% and anything in between- although some individual do not reach that low a level and still maintain response very well over the long term without adverse events.
As long as you take your TKI therapy as prescribed the fusion gene will be kept at a very low molecular level where it will not cause any problem in the longer term. In other words, the majority of people will be able to live out their normal lifespan.

I know this may be overly technical at this stage in your CML 'experience', but it is a good idea to just read and read again until you get the terms stuck in your head.

Have some faith- there are by now tens of thousands of people worldwide who have been successfully treated with TKI therapy over the last 15 years. You are not on your own by any means.

A note on carers.... it does not mean that you need a carer in the normal sense of the word- rather it refers to partners/spouses/family members who are also affected by their loved ones diagnosis of CML. The meeting is also to support and inform them.

Hope this has helped reassure you in some way.

Which hospital are you being treated at?

Sandy