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New Member to Group

Hello to all.

Thought I would take an opportunity to introduce myself and give a quick overview as to how I've come to join you. My name is Colin and I am 61years of age. I live in Bury St Edmunds in Suffolk.

Formal and confirmed diagnosis with CML on Friday last week 23rd April, following typically a week previously of concerns and raised white blood cell count in bloods, having being checked for something completely different.

Have been trying to absorb so much information so quickly having been fortunate enough to share really good health until now. I have been proscribed Imatinib and partnered by Allopurinol. Awaiting a bone marrow procedure next Tuesday 4th May.

I'm a little confused, a little worried but supported by strong family and friends network and very much encouraged by what I have been told by so many professional people, what I have read and what I can share and learn from this forum and group site.

So pleased to know and be part of others experiences and advice.



Hi Colin,

Welcome to the CML club of which you are likely to be a member of for some considerable period of time.Prior to 2002 CML was a fatal condition but now thanks to the benefits of research and drug development it is a treatable condition and for a majority of patients able to be managed and we are told that we should have a normal life span.For most of us it is not yet totally curable but some are able to discontinue treatment once they gain a deep level of remission.There are some veterans on the Forum here that have been on treatment such as imatinib for nearly twenty years ( for me it is fifteen years) and are still doing well.

Some of us  found that being diagnosed happened as a coincidence when some other condition was being investigated and because it is a relatively rare condition many GPs have little experience of patients with this condition.I found the first six months after dx to be quite challenging especially after the initial shock following diagnosis.However because imatinib is targeted molecular therapy as opposed to more traditional forms of chemotherapy that the side effects are relatively mild;however there are side effects such as bone and joint pain,tissue swelling ,eye irritation and for some night cramps etc.-but some experience few issues.

You will probably find that Allopurinol will be given to you for only a short period of time and it is used to prevent the development of tumor lysis syndrome which is when a large number of cancer cells die within a short period of time (as a result of you imatinib therapy ) and  it can lead to a build up of uric acid and high levels of potassium,phosphates and calcium in the blood which would compromise the function of the kidneys.

The imatinib will be a longer journey where your physician after the bone marrow biopsy will be able to confirm diagnosis and level of leukaemic activity and then look for milestones in the next year or so to establish what progress is being made and from thereon monitoring and maintenance of your remission.

I think that it is good that you have located this site soon after your diagnosis as it is always useful to be able to inform oneself of what is happening on the CML journey-I hope that you find it informative and helpful.

With best wishes,


Hello John

Thank you so much for your speed of response and how welcoming and informative your words are and will be throughout the coming weeks, months and years.

Taking each day and step as it comes and I am so sure I will read back over this initial advice many times.

Thank you again and will be back in The Forum many times to ask so many things of you and others as I push on.


Welcome to this forum Colin,

Take your time to learn about CML and its treatment. Thankfully, TKi therapy has changed the prognosis of CML. Should you need any advice about anything to do with CML, TKi therapy and/or on the various blood or marrow tests I am sure someone on this forum will be able to advise. It is very good that you have found this forum so quickly. 

I assume your doctor wants you to have a marrow aspirate/biopsy to confirm your diagnosis? Hopefully this will be a one off and the rest of your samples going forward will be from your peripheral blood.... you should have no need to continue to give samples from your bone marrow.


Hello Sandy

Thank you for your early advice, and yes reading everything I've been provided with to learn as much as I can. I have just walked in and opened my patient's letter for my visit next Tuesday. It confirms everything discussed with Haematologist and staff on Friday. That is fluid and a second called a trephine biopsy to retrieve marrow.

Presume that this will be analysed in due course. Staff confirmed your thoughts that thereafter bloods will be monitored weekly initially for 3 - 6 months without further need to repeat the marrow procedure.

Thank you so much again