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Newly diagnosed

Hi everyone I Have just been diagnosed with cml and was offered the choice to join the new spirit II trial and I am on dasatinib. Is there anybody out there who is on the same trail. I am 43 years old I have two children aged 8 and 10 and I am finding it hard to accept that I have Leukaemia as I feel quite okay. It doesn,t seem real - does anyone else feel like this

Hii am new to this site my

Hii am new to this site my husband is a CML sufferer to as a carer i find it very difficult to understand my husband was diagnosed almost a year ago and he has never been right since hes tired all the time sweats perfusly itches has had a lot of pain sice hes been on them since then hes now been diagnosed with excessive diverticulitus his doctor is not sure if pain from yellow bullets ot diverticulitus so he has to have his bowel removed were waiting for him to go in but looking at other peoples comment they have stomache pain too we have young children at home and they dont see there dad as hes always tired then in the night hes up and down which keeps me awake and i feel so tired ive had to go on the sick from work myself to look after him we tried to get dla and keep getting knocked back wonder why that is as other people are able to get it even when they pretend they got bad back why dont they give it to genuine people who realy need it thanx for listening to me rant on xx

We applied for DLA for our

We applied for DLA for our son who has CML and asked for advice from the hospital social worker. She was able to tell us how best to complete the form and we were succesful in getting DLA. There must be benefits you are entitled to, so please do get advice. You sound as though you have got enough on your plate without needing too much financial strain on top of things!
kestrel

Can anyone help?

Hi Jacqui,

After reading your last post I think you would benefit from someone explaining the condition to you fully. As I have only just been diagnosed myself I really dont feel qualified to do so. But I see there are some very experienced people on here that would be able to give you some pointers on questions to ask the hospital, key indicators with results and what information we should gather ourselves to monitor and understand our progress etc.

To be honest the latter questions would help me too!

I feel that understanding is key so you can ask your specialist proactive questions and keep an eye on what treatment is best for you.

Speak soon.

Pesty.

xx

Back next week

Hi Pesty I will try and make a list as I am seeing my consultant next and will let you know how it went

Jacqui

Than you all for the warm welcome

Yes it was a shock as like so many of you I was having routine blood tests for nearly a year as my white cells were raised and more recently my platelets were high. I was having tests for the menopause as I was having night sweats - my Doctor kept asking me if I was bleeding from anywhere or had I noticed anything different as she could not understand my blood tests, I was also checked for breast cancer as she found a mass but that was negative. She finally got fed up with taking blood from me and rang the heamotologist dept and he said he would see me. Even then I was not worried as I felt fine - Okay I was tired but with two children I thought that was normal.
When I started Dasatinib I was scared of the side effects but apart from the first couple of days it has been okay - I still get tired and bad stomachs but all in all it is okay. I just hope the pills are doing something. My next appoinment is on the 6th October - what happens then can they tell if it is working at this stage - I am that thick I didn't even realise that they are a chemotherapy drugs - Does anyone live near Colchester in Essex

dasatinib?

Dear Jacqui,
as Michael has indicated, it is unusual that you have been given dasatinib (Sprycel) at diagnosis as imatinib (Glivec) is licensed as the first line therapy for newly diagnosed chronic phase CML treated within the NHS.
However, dasatinib is a very effective drug and is one of 2 second generation (imatinib is the 1st generation) drugs for CML. You could ask your haematologist why he/she has chosen to treat you with dasatinib as first line.

All three TKI's (imatinib-Glivec/dasatinib-Sprycel/nilotinib-Tasigna) work in very similar ways. They all specifically target and 'switch off' the signaling proteins with the abnormal PH+ CML cells that cause these cells to divide and continue to grow.

These drugs are different to those that we normally understand as 'chemotherapy'. So you are not 'thick' when you say you didn't realise you were being treated with 'chemotherapy' ... strictly speaking they do contain 'chemical' compounds and are used as 'therapy' to control a cancer... hence chemo+therapy.. but their mechanisms of action - as I have tried to explain briefly, and probably badly, above- is of a whole different order.

You should not be frightened of side effects. As you go on in your therapy you might, or might not, experience a series of side effects but you will find that most if not all are easily managed and there are many ways to lessen and/or completely control the effects.

Most people are able to live complete and normal lives...
I am sure you will find answers to your questions but take it slowly and allow yourself to ease into it rather than try to learn everything all at once.

Sandy

Thank you

Thank you Sandy all your comments are both comforting and helpful

Have I missed something

Have I missed something ?,you have gone straight on to Dasatinib without going on Glivec?
What hospital are you under? sorry to have so many questions
michael

Dasatinib

Hi yes I was offered to go on the spirit II trail for newly diagnosed cml patients. I wasnt just given dasatinib it was a computer generated decision. The trail is monitoring/comparing imitanib against dasatinib and it is 50/50 what tablet you get. I suppose what happens as people join the trail the computer gives alternative patients the dasatinib. I am under Colchester Hospital - Hope this helps

Hi thats interesting,I shall

Hi thats interesting,I shall have look out for information on spiritII trail,Glivec failed for me and I am on dasatinib and making good progress .The world of CML is fast moving,best of luck jacqui
michael

welcome

I would like to welcome all new members to this forum. I do hope you continue to find support here and although a diagnosis with CML is life changing on several levels, you will find a positive benefit out of the negative. Talking is essential to recovering from the shock of diagnosis and you can do that in an online forum like this and/or find others willing to meet up informally.
Some of our members never post but find great comfort in reading what others say here.
We reach a lot of people worldwide (more that you probably realise) and all of them find some support in the knowledge that there are other people going through the same or similar experiences.
So keep posting when you need help, when you have questions, when you have something to share that will help someone else.
This is a worldwide community and all the more powerful for that.

Sandy

And another one! :-)

Hey all, I guess we are not as uncommon as we first think hey! :-) I was diagnosed on the 9th Sep and started my treatment last Thursday - I am on Imatinib - the golden bullets (to quote another fellow member).

I think all of us feel the same, so normal yet so different.

I was originally misdiagnosed as having Shingles and then after a blood test was told the news. I am female and 29 years of age (I was only joking when I said I was going to fall apart at 30!)

At first I found it helped by thinking of it as a blood condition. Without using the 'L' or 'C' words to begin with things seemed a hell of a lot less scary for me. After a while my head adjusted and I can say these two words understanding that nothing changes, its still the same blood condition and I wont suddenly drop down dead after using them.

This site has been fantastic for gaining information on CML and the support network seems invaluable.

This is my first post and I hope to get to know you all a bit better soon.

We can all get through this, I truly feel that once you have your head straight, its half the battle won. Like we said, the rest feels normal!

Anyone living in the Croydon area??

Pesty
xx

Hi thanks for your words

Hey I was confirmed with cml on the 9.9.2009 a dated you won't forget 999. Hey have you been given the option of joining spirit II trail - I am trying to find out more about the two drug which is imatinib and dasatinib

Jacqui x.

making contact

Hi Chrissie, a warm welcome to the group. I am sure you will find lots of support & help here. I too live near Exeter (what a small world). I was dx just 2 years ago. If you would like to make contact, please email me: ali@loram2028.fsnet.co.uk.

Hi Ali

Thanks for your reply. I have now been on Imatinib for 10 days and feel no side effects - except I'm always hungry. Have my next appt at the RD and E hospital on Friday. What should I be asking them? It all looks so scientific with ratios, percentages etc. I can cope with WBC, Haemoglobin, Platelet counts - is that enough for now?
Still having discomfort from my fingers, but they have improved since I started on the medication and my nails are no longer yellow. No one seems to know what is causing it, but my consultant thinks it could be due to restricted blood flow which should ease in time.
Most impressed with hospital and staff.

Also newly diagnosed

Hi Jacqui
I was also recently diagnosed with CML ( a couple of weeks ago)and, like you, have no symptoms and can't really believe it. The nurse at the haemotology clinic says she has heard this before so I guess it isn't unusual with CML! I went to my GP with bruised, swollen fingers and blood was taken.....I also chose to join the Spirit 2 trial and am on Imanitib
( started treatment on Friday of last week). I am a 60 yr old woman living near Exeter.

Good luck with your treatment - I understand huge progress is being and has been made over the past 10 years or so, so we can be pleased that we are DX now rather than then.

all the time

Hi Jacqui - sorry to hear about your DX, however you have found a great community hear to help you through

I was Dx's nearly 3 yeas ago almost by accident as I had tried to donate blood and when i couldn't they said they would send it off for tests, a few days later wham the Dx, and almost every day I have the same feeling as you as I was and am feel fine.

CML can be for some something that is a little in the background with just a tablet a day, but for others this is not the case and either the drugs don't work out to well or the side effects are not bearable.

rob - http://cmlblog.spaces.live.com