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Newly diagnosed with CML

Hi All

I am 28yrs old and live in North Wales.

I was diagnosed on Monday 21st February 2011 with CML, i have never heard of this before and neither had any of my friends or family. When i was told what i had i was so scared that i was about to drop down dead. I have a 7 year old son who is my world and all i could think about was him. After a few days i am managing to get my head round this i think. I'm still very confussed. I am going back to the North Wales Cancer centre on Tuesday to be signed onto the spirit 2 trial where i shall be told what drug i will be taking. I am so grateful that there is a site like this and also the yorkshire CML forum as initially i thought i was the only person ever to have had this. Its so inspiring to hear other peoples stories.

I'm hoping that in the future many of you can help me with my results as at the min i know nothing other than my white cells are at 33k and my platelets are 800, my spleen is not enlarged but i don't no what any of this means.

I must say thank you to David and Chris for there help and info so far they have both been great.

Hope you are all well

Ni

CML in North Wales

Hi Ni,
 
I too live in North Wales (Kinmel Bay) and am 6 years post-dx.
I am happy to make contact if you like cerries@aol.com or www.leukaemianorthwales.org
 
Terry

Hi

Hi Terry
Small world as i also live in Kinmel Bay. my email is naomiio@aol.com x
 

Newly diagnosed

Hi to you all
So glad to have found this site. Have just been diagnosed with CML just over 2 weeks ago -still in total shock and can't stop getting upset. I have a two year old and supportive family who won't let me mope around forever but I think this site is going to be invaluable as unless you are going through it I don't think anyone can know the full extent of what you are going through.
As probably for alot of you this diagnosis came out of the blue I'd been feeling a bit tired for a while but that's been since having a baby then I noticed a lump under my left rib after I slipped about 6 weeks ago and went to the doctor thinking it was related to that. The next day I was in hospital for a scan and waiting all day for blood tests then came the invite into an enclose room.  My partner and I felt we were in a film or something.
Well I don't know where this two weeks have gone - I'm about to start on the SPIRIT 2 Trial tommorrow, I've briefly seen Proff Clarke as had to go the Liverpool Royal for a filtration of my white blood cells in the first week and he had to sign it off but my treatment will go via Arrowe Park.
I'm too scared to read stuff on it properly yet just trying to be postive as I've heard this is good long term treatment and as all of us just want to get on with a healthy and happy life. Its funny the things people say to you about CML though as from this link there seems to be a few people who are same age as me or younger yet I heard this was more common in over 65s! I'm 40 by the way. I haven't told many people yet ( although all family know) as I really don't know how to approach it all once the word is mentioned  I've had some strange things said already mostly about they didn't expect to see me looking so well or some people just seem terrified when speaking to me!
Any advice/good news would be really appreciated.

Welcome to the club

Hi
Welcome to the club nobody wants to join. Everyone here on this site are people who care about others with CML.
I was dx in Aug 2004  and have had the very best of treatment from the NHS.
I know it takes a lot to get your head round and this will take time but being positive certainly helps.
There is a seminar for patients and carers of CML in Cardiff on November 12th. I realise this is early on for you but It was the best thing I ever did to go to a seminar just after being Diagnosed. You will meet people a similar situation and listen to some o the best doctors in the country and at the same time ask them questions. You MUST ask questions of your local doctor and Prof Clarke and make notes as quite often you forget what they say afterwards. Also make a note of the questions you want to ask as often you forget when your in that consulting room.
All the medication has worked for me, i'm just intolerant to them and will be starting Bostutinib on Thursday this week.
Please contact me if I can help you more at steven.carol@ntlworld.com
Good luck and keep in touch
Steven
 
 
 

Hi Steven

Hi Steven thanks for getting in touch, do they have the patient days quite regular? Think I would like to get to one at some point would be good to meet everyone and hear what the experts have to say. Can't fault the NHS so far they've been a great help . Yes think you're right about asking questions - its just a case of working out what I should be asking. I see Jessie the research nurse today regarding the trial and I have read up on the information regarding it. I'm going to ask her more about side-effects depending on which one I'm allocated. I suppose that's the start. Good luck with your new treatment on Thursday. I will keep in touch. Jo

Joflo

Good you found us early on because as you say- the best people to talk to are the one's who have the same experience and therefore understand what you are feeling and understand what you need to hear..... 
Regarding age- the average age of diagnosis is around 57--- but that is an average, so there will be people younger and people older.
In asia/pacific region average age at diagnosis is much younger (I think around 35-40)- I am not yet clear why this might be but probably because older people just do not go to the doctor- due to lack of resources - lack of healthcare infrastructure etc.
CML is rare 1.5 per 100,000 per polulation..... and since the advent of imatinib (Glivec) it is no longer a life-threatening condition. 
In my opinion- it is good that you have agreed to be enroled in a trial. This means you will be very closely monitored by an centre that is expert in CML (I assume Liverpool Royal?) and you will have access to the best possible therapies without worrying about whether the government will agree to pay for your treatment through the NHS. So, I assume that is why Prof Clark has suggested the Spirit 2 trial.
Take things slowly and read about the disease at your own pace. You don't need to tell anyone outside of your family if you don't feel comfortable. There is plenty of time and you don't need to deal with other peoples terror!
We have all experienced that kind of situation and although it is hurtful, eventually you will find a way to deal with it.
If you need advice then please ask here. Although I would encourage you to use a new comment rather than join exisiting discussion threads that might be months or even years old.
Best wishes,
Sandy

Thanks so much

Thanks Sandy and everyone who has replied so promptly - in the meantime have worked out how to post via proper route - everything is up in the air at the moment and I seem to be doing everything the wrong way!
Its so comforting to know you are all there and that there's good news to all of this - my consultant, partner and family all are positive but when you are new to this it just takes time to get your head around it.
Yes I think I will take my time telling people, I'm probably feeling more sensitive to peoples' reactions because I'm still coming to terms with it all myself.
It was Arrowe Park who have suggested the trial but I think they liaise with Proff Clark as my results where sent over there for confirmation etc.
Good to know you are all there and I will keep in touch.

Just wanted to to say hi. It

Just wanted to to say hi. It is a huge shock when you are diagnosed and it does take time it feels like a very bad dream to start with! I was only diagnosed 4 month ago and I have found this site so supportive and people reassuring me has helped greatly. I am only 36 and have a young family 8,4 and 2. I am glad you have found this website I was lucky enough to have been given the information about this website from the hospital so I have used it from the first day I was discharged from hospital. After 4 months I'm not as tired and not as tearful still have my days though but not nearly as bad as in the beginning. I'm happy if you want to get in touch also I'm at lynne.robertson4@btinternet.com. I am also going to the patient day in Cardiff on the 12th nov which you might find of benefit.

Take care
Lynne

Hi Lynne

So nice to hear from you - your so right about the bad dream bit. I'm so glad I can can speak to you and others who have responded as I'm sure my partner and family are sick of me bursting into tears and moping. I have had one day where I just thought sod it and felt great but today I'm feeling a bit weepy.I suppose its going to be up and down for a bit. I will probably be hounding you with questions once it sets in.

Hi Joflo

Hi joflo
I am glad you found this site
Initially the diagnosis with Cml can be quite daunting and potentially a very worrying time.
There is a lot to take in and learn but things are as quite bleak as you may initally have thought.
I was diaganosed in march 2009 ( at the age of 39)and am under professor clarke at liverpool.
My life continues to go on and things look better all the time.
If you want any more information you can email me at stu.j28@sky.com where i will give you my phone number should youmwant to chat..
I hope this helps.

Yours in the cml club
Stuart

Hi Stuart

Hi Stuart
Thanks so much for responding it really helps, so good to hear about your and other peoples' experiences, I'm feeling alot more positive just hearing what you have to say. Thanks for your contact details too, I'm sure I'll be in touch when the dust settles and I start getting to know the detail.  I've met Proff Clarke and he made it sound like a club too, he said he had 231 CML on his books,so I feel like the new member now!

Hello

Hi jofl
Welcome to the club. I was dx in Feb this year. When i was told i thught that's it my little boy is gonna be left alone. Now 9 months on and to be honest i forget i have it (until tablet time lol). The initial shock of it is horrid but please ask questions on here as it has been a lifeline for me. As for telling people that is up to you as no-one can really tell yu have it. The trial is a good idea even though first few weeks can be a bit up and down. If you ever need a chat let me know. Naomiio@aol.com
Take care x

 Hi Naomi I too have a 7

 Hi Naomi

I too have a 7 year old son, and a nearly 15 year old one too. (i'm really old :)) My older son had done his own research when I found out I had an enlarged spleen and had worked out I could have CML before me, and was worried about telling me in case it upset me, bless him. Soon after I started dasatinib I had to be transfused, so I told my youngest that I needed some energy blood. he knows I take tablets each day to help my blood, he knows I have to have blood tests etc to see how I am. I have told his class teacher about my situation. I have generally kept things pretty upbeat and positive for both of them because I think that is a realistic approach to take. Also especially for my youngest there seems little point in telling him about scenarios that may or may not happen several years from now. But I explain things so he can understand. Also as your blood and energy levels get more normal, then you can get back to more normal family life...I did find it very hard just after my dx to be normal - bath and storytimes I was a blubbering wreck :) - but now it's all a lot better and I'm sure it will be for you too.

your welcome,anytime,i met

your welcome,anytime,i met someone from this site who was dx same time as me and he helped me through at the time.xx

Hi,all ive told him is that

Hi,all ive told him is that mummys blood doesnt work like it should and that i take tablets to make it normal again,i try to keep things normal 4 him,it was very difficult in the beginning,it took me about 2 years to get my head round it all,please email me and ask anything u like,just dont feel alone ,im know 33 and doing very well,in remission.just watch what your reading ,i had myself dead and buried after reading some stuff,try to stick to this site its fab,

kath.xx

thanks

I have told my little one something similar as well, i have had to stop with google cause like you i also had my self convinced i was about to drop down dead. Scared the life out of me. Thanks for your email i really appreciate it x

welcome Naomi

Dear Naomi, welcome to this forum. I know how shocked you must be, especially as you have a child. My daughter was 12  when I was diagnosed over 12 years ago. Things have changed since then and we have far more choice of therapy. I think you will benefit enormously from taking part in a clinical trial ... and you will be monitored very closely and by expert clinicians. 

Please consider waiting before you tell your child any more than is necessary. Wait until you know exactly what your options are and how you feel yourself. 

Please do not hesitate to ask questions here, 

Best wishes,

Sandy

Thank u

Thank u Sandy, i am slowly getting to grips with it i think. I have not said much to my little boy other than mummy is poorly and will have to take tablets. I am panicking now about oney and my house and work etc which i think is pretty normal.

Thank u for getting in touch really appreciate it. I must say as well that this site is fantastic x

Also at the North Wales Cancer centre

Hi. I was diagnosed in May last year, and I'm being treated at Glan Clwyd under Dr. Hoyle. I enrolled onto the spirirt 2 trial and was allocated Dasatinib which seems to be having great results with minimal side effects.

The Cancer centre staff are excellent and very reassuring. I also went to the Royal Liverpool hospital for a consultation with Prof Clark which was well worth the trip.

Like you I was very worried for the first few weeks, but my blood quickly returned to normal and I'm living much the same as I used to. In fact my energy levels are better now than ever. I'm sure it will all go well for you too.

thank u

I'm with doctor Heartrin, only had my dx appointment with them but they seem good. The specialist nurse is called Steph and she is lovely. I am going to Speak with Someone at the Royal Liverpool in the next couple of weeks. Thanks for letting me know you are there as well, we may bump into each other at some point.

Thanks Ni

Hii was dx 7  years ago i was

Hii was dx 7  years ago i was 26 ,my son was 10mths at the time,its all very scary at first but things do get easier,please email if u would like to talk,kathy.prudence@homecall.co.uk

kath.xx

Thanks Kath

Just a quick question, as you were basically the same age as me when DX. Now that your son is 7 has he noticed anything as i'm worried about what to say to my little boy.

Thanks Ni x

What to say..

Hi Ni - welcome to this very exclusive club!

The question of what to tell children is always a very personal thing, but I'd just like to give a perspective from an Infant teacher's point of view.

I've had CML since 2006, have 3 kids [who are now 23,21,and 19]. I also teach full time 7year olds, have taught 3 children with leukaemia over the last decade and also very recently taught 7 year olds whose mums have had breast cancer and brain tumours. My experience has been that 7 year old children can deal with most things very well, provided you explain things to them in terms they can understand, and that you answer the questions they are bound to have as honestly and as openly as you can. When/If you do decide to have a conversation with him, let your son lead the conversation if you can, he will take things at his own pace. He may use the 'cancer' term - many kids have heard of it, even at 7. If he does ask if you have cancer, be honest with him if you feel he can deal with it, but whatever you tell him, be really reassuring and tell him that the medicine you are taking is really really good!

I would also suggest you tell his teacher, and anyone else who has a lot of contact with him - it really helps me when a mum tells me whats going on, then I can look out for any unusual behaviour at school. Young children often will ask their teacher, sometimes in a very round-about way, when something is playing on their mind - so it will really help him/her if you would let them know what you would like them to say if the topic of your illness is raised.

I hope this helps.

Take care, Janet [from South Wales :-) ]

Thank u

Thank You Janet, really appreciate it. I ahve had a brief chat with my little boy today and he seemed to accept it quite well, i told him i have poorly blood and that the doctors and the hospital are going to give me medication that will try and keep it from getting worse. He never mentioned cancer as he has not known anyone with cancer in the past.

I am waiting for his questions and will respond to them accordingly. He seems ok and has been his normal self today which has made me feel 100x better.

I have spoken to one of his teachers already as i am friends with her and she is informing the head and all others that need to know.

Thanks again for the response.

Take Care Naomii x

Welcome to Lots of people who can Help

Hi ,

 It's trauma being given the news and takes a few sleepless nights to come to terms with things.However, in a month or two when your blood counts return to normal you'll start  living as you have done previously.

I was diagnosed last August and felt pretty much as you have described. I'm  also on the Spirit 2 trial (on the Dasatinib arm)and feel fine. I play 5 a side every week and squash and running regularly. I reckon I feel fitter since starting the treatment.

Good Luck........and don't worry........swine flu is worse........as one of the ladies at the recent CML conference pointed out.

Cheers     

Dave M

Welcome to the site,  If you

Welcome to the site,

 If you read through the site you will find help & guidance with just about anything to do with CML.The initial diagnosis is allways a shock, & your head is bound to be spinning with all sorts of worries & confusing thoughts. It sounds like you have been diagnosed early, which is allways a good thing, & hopefully once you start on which ever drug that is given to you, you will respond well, & that your blood levels will quickly return to normal.

 This site is allways their to offer advice, & as you will discover from its pages, is full of comments from people with many years of living with CML. Try not to worry to much, easier said than done, but things will become clearer with time. One initial piece of advice, try to keep a note of your blood levels in a notebook, so that you can see for yourself how things are going, & feel free to ask both us, your fellow CMLers, & especially your doctors about about anything that you do not understand, as we are all here to offer whatever help we can.

Chin up & keep in touch

Bob

Bob just wanted to say thank

Bob just wanted to say thank you, this site is proving so useful to me already, thanks for the note book tip i will defo be doing that. Thanks again Naomii