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Dad recently diagnosed with CML - lots of questions.

Hi

This is my first time on this forum. My dad was diagnosed with CML and the Dr feels he is in the chronic stage. Does anyone have any experience of this and is it true that you can live with CML in the chronic stage for a long time if it is controlled well.

Also, he is very concerned that his job, self-employed painter and decorator, has something to do with it. He feels that the fumes from the paints and chemicals in the paints could be a contributing factor. Is there any truth in this? Will stopping painting be of any benefit?

I'm sure there are many other questions that I will need answered so TIA.

Hello,

You ask a number of questions, which is only to be expected when you get a close relative diagnosed with a serious illness. My wife was diagnosed with cml in 2003, and I certainly went through a period of questioning many aspects of the illness and the treatment options.
I am sure you will find a lot of support from this site, there are contributors who have many and varied experience of cml and who would be very willing to share those experiences with you.

You seem to raise two main points:

1. Prognosis for cml

With the advent of drugs like Glivec, the treatment of cml has been revolutionised. Many people are experiencing very good results, and the prognosis is so much better evene than it was 6 - 7 years ago. These drugs are NOT a cure for cml, but hopefully they keep the condition under control. It is important that you father is cared for by an experienced Haematologist - if he can be seen at one of the specialist centres so much the better (I'm assuming you are in the uk)
Hopefully he has already had a consultation with an appropriate specialist, or will be soon.

2. Cause of cml

The cause of cml is not really known, however exposure to ionising radiation, or to certain chemical solvents have been implicated (especially benzene).
In your father's case he obviously has been exposed to the solvents in paints etc.
However, I don't know if anyone will come up with a definitive answer on this matter.
Hence, I'm not too sure whether anyone would suggest he gives up his work to improve the prognosis. To a certain extent, the damage to the chromosomes will have already occurred - this is what causes the proliferation of white cells in cml. Whether continuing exposure to solvents etc will worsen this, is possibly unknown, unless someone knows anything else about this.
Best wishes to yourself and your father
Paul

Thank you for taking the time to respond.

We live in the Highlands, nr Inverness so I don't think we have a specialist hospital nearby. He is seeing the Haematologist once a week at the moment to try to sort out his medication. I think he is taking hydroxycarbamide and Glivec at the moment.

I hope you and your wife are OK. Is your wife dealing with her CML OK?

Hello again,

I'm not too sure about specialist centres in Scotland - I live in Wales, my wife sees the haematologists at our local University Hospital - they are quite specialist in their field, but not, I think a recognised specialist centre for cml.
I do believe that there is a very good department at Glasgow, but , I appreciate that's quite a long way from you (having visited the highlands once!!)
One thing that you may be interested to know, is that Scotland is the only home nation in the uk to have approved the funding for a drug called Dasatinib, this is a drug which is similar to Glivec but does help if resistance to Glivec develops (this does happen in a small number of cml patients)
At the moment my wife is doing well on a dose of 600mg a day of Glivec, which she's been on since mid 2004.
I would think that your father will be taken off the Hydroxycrbamide once his white cell count drops to a manageable level. This drug was one of the earliest in use for cml, but thankfully, times moved on, and with it some major advances in treating cml.
Hope that all progresses well with your father and the rest of your family.
Best wishes
Paul

Paul

Hi again

My mum is from South Wales and we have family living in Penarth. I haven't been down for a while but must visit soon.

I'm glad your wife is doing well. My dad has another appt this morning so I will know more about what drugs he is on later.

Thanks for your responses.

Hi & hope your dad is doing OK.Previous comment re specialists in Scotland correct. Professor Tessa Holyoake in Glasgow is a CML specialist & she runs all CML commercial studies in Scotland. Dr Shepherd in Edinburgh also very good but she doesn't get involved in trials.Prof Holyoake tends to get most referrals from elsewhere.

It is a shock in the early stages to find out about CML but a lot is known about it now. As you are in Scotland, and I know there is a great distance down to the Lowlands but there is an annual conference on in Edinburgh this year (changes location every year) that gives all the latest news about advances. It is meant to be patient focussed and is very good. The booking form for it is on the right hand side of the Webpage - Jul 2.

With regard to your particular questions, I was diagnosed in 1993 and have seen such massive advances in treatment over that time. Your Dad has the opportunity to be very optimistic about his future, particularly if he is responding to Glivec. As mentioned in one of the other responses, Scotland seems to be a good place to be due to the funding.

As for reasons for "why me!", I work in the Construction Industry and have always felt that chemicals used around me over the years are likely to have caused, or more likely triggered the disease (my opinion). Benzenes and other similar chemicals, after my diagnosis, were mentioned in my Company's Safety Manual as a possible factor for Leukaemias.

Best wishes to you (for supporting your Dad) and your Dad

Phil & Babs

Your dad will certainly be given Glivec as this the the first line therapy for ph+ cml. the vast majority of chornic stage patients (over 89%) respond well to this drug and more importantly hold their responses. moreover those resonses are improving over time.

please let us know how your dad gets on.
if he can get to Glasgow and see prof. holyoake i am sure his care would be of the very best available in the UK.

best wishes
sandy C ;o)

Just saying hello - I live in Dinas Powys which is all of about 3 miles from Penarth!

I have CML, diagnosed one year ago yesterday. So far all is going well - I am being treated at Llandough Hospital which is on the outskirts of Penarth. I take 400mg of glivec daily, and at the beginning was on hydrea like your dad to get the white count under control.

All the best to your Dad, and to you also - when you are down this way next you must let me know and we could meet up. I have found that I always have questions I want answered and its always good to talk!

Take care,
Janet

I live in Elgin and was dx in April 05. I have received excently care since then at the Aberdeen RI, by their Haematology Team under Dr Culligan. They have been 1st rate.

I hope that your Dad progresses well and I am sure that he will be able to carry on working, if he wants to. As regarding cause, I have often wondered if working with nuclear weapons in the RAF is linked to my own CML, but I've decided that it is not worth dwelling on.

Best wishes
PaulR

Dad was at the hospital yesterday. His white cell count was down to 28 and he is just taking Glivec now. He said he is feeling a lot better in himself aswell. The dr was really pleased with him.

All your comments have been really reassuring and I wish you all, all the best.

Janet - I have been to Dinas Powys as that is where my uncle and aunty used to live. You are right about all the questions, they do keep coming up!

Thanks again

Mistymoo