Hi everyone. I guess growing membership on this forum is never a good thing, but I've been reading much of the materials here since being diagnosed with CML (just 3 days ago), so thought I'd introduce myself. I'm David, early thirties and live in London (sounds like an introduction on Blind Date!). The last few days have been a bit of a whirlwind, really.
Anyway, hello!
David.
Welcome! Of course the first few days - and weeks - are a bit of a whirlwind. BUT you will find all sorts of comfort and support here. One of the things to remember is that life will gradually get back to a new "normal", so give yourself time. There's a lot to learn, so don't try to become an expert overnight.
I hope things go well for you.
Olivia
Hi David and welcome.
Although you are right re: increasing membership but I am always very pleased when someone newly diagnosed finds us so quickly.
No one can prevent the development of CML (well not for the foreseeable future anyway) so numbers will inevitably go on increasing. However, over the last 2 decades we have seen the development of some pretty spectacular innovative therapy, and since 2000 access to those therapies has changed the prognosis of chronic phase CML.
Olivia is right, give yourself time to adjust to this. You are quite young to be diagnosed with this disease, but you are by no means unusual.
Currently there are several options for 1st line therapy - both 1st (imatinib/glivec) and 2nd generation (nilotinib/Tasigna- dasatinib/Sprycel) TKIs are on offer as first line and 2nd line treatment through the NHS.
(*Owing to cost, dasatinib/Sprycel is not approved for use in newly diagnosed but nevertheless it can be accessed through an application- by your doctor- to the cancer drugs fund.)
If you have not done so already then take a look at the first couple of articles on the Home Page- this might help you get your head around the current thinking of expert clinicians regarding how best to ensure a successful long term outcome with TKI therapy.
There is also the option of enrolling in a Clinical Trial- -both ponatinib and bosutinib two even newer candidate TKis, can be accessed in this way. Being in a clinical trial has other benefits to do with close monitoring of your response to therapy.
There is also the possibility of stem cell transplant if you have a suitably matched donor- although this is more challenging to say the least, but some do prefer or need to take that route.
As you are in London you have a good choice of expert CML centres.
Where are you being treated?
Please ask if you need any help with anything at all related to CML and the options open to you for 1st line therapy currently available in the UK.
Take your time with the clinical stuff - it is definitely worth teaching yourself about but that will take a while- and take a look at the video interviews with CML patients-
Glad you found us.
Sandy
Thanks! So much of that is really useful.
I'm in London, and being treated at St Barthomelew's. I've been asked to participate in a trial called SPIRIT 2 where I would have a 50/50 chance of being put on either dasinitab or imatinib.
David.
Hi, David
I'm 48, on Dasatinib through Spirit 2, having been diagnosed in February.
Many people will tell you the same thing that while everyone goes through the same stress in the early days, most of us, like me, now pop our pill during the day and never really give the CML a second thought! We have occasional side effects, but none of it is terribly invasive into our lives bearing in mind the benefits the drugs bring.
One of the hardest things is still telling other people, and then trying to explain to them why it's actually not quite such a big deal as they might think it is.
I'm also in London, based in Greenwich, if you ever fancy a chat about it.
Rod
I'm a year since dx and also on the SPIRIT trail - on Glivec arm. You've come to the right place and its good you've found it so quickly. I did find this site within the first couple of weeks and wish I had found it as early as you as it would have stopped me putting myself a lot of stress during that time as I only had an out of date booklet the hospital gave me. They did encourage me to google it but you get overloaded with such variations and old data..you really need a site like this in the first instance : ))))
David,
I completely understand you saying that is the biggest stress. My family live in the north (Liverpool) and I found it very difficult/impossible to tell them about my diagnosis over the phone. My mum and dad and brothers were, quite understandably, devastated and it took a lot of talking to help them through it.
It might be helpful for your family if you contact the Irish patient group- I am sure they would be able to help reassure your family. You can find their contact details on the links page under patient groups...
or here
http://www.irishcmlgroup.org/index.php?option=com_content&view=frontpage...
Best wishes,
Sandy
Thanks Sandy, that's going to be really helpful. I am allowed fly home this weekend (after a bit of appointment shuffling!) to see my family, so I am not really sure how we're all going to react as a group. I'm from a medical family (I'm the exception to the rule!) so I think that is helping everyone keep calm.
Hi David,
So pleased you found this supportive community- diagnosis is a massive shock, but Sandy and others here work wonders in explaining and presenting facts, and the emotional support of members is equally invaluable.
I was diagnosed three years ago aged 33, and I was fortunate enough to get put on the Dasatanib arm of the Spirit 2 trial, but Imatanib is an incredible drug too. It's hard to be talking about cancer at any age, but at a time when you maybe feel like life is just getting going it's really difficult.
All I can say is that with amazing support from family and friends, great medical support including an amazing counsellor, and a lot of positive thinking (not easy as I also have OCD!) not only is my life relatively normal, but it's better than ever. It may also be relavent to let you know that my wife and I had a little girl two years ago, and in fact are expecting another little girl at Christmas- both conceived naturally while on Dasatanib. Many things are still totally on the cards for you so hold on to that.
All the best.
Adam
Hi Adam... good to hear you are doing well and with such good support from your family, friends and others. As you say- this is so important. Congratulations on the upcoming birth of your second child.... amazing when you think about it- and such a good message to all younger CML patients out there. Thanks for taking the time to share your experience with everyone. Truly inspiring.
Sandy
