After writing to Ayrshire and Arran health board director of finance my husband is now getting his pcr's done after 2 years since the sti trial ended. Blood taken on Wedneaday 16th. awaiting the result.If anyone is in a similiar position write to the financial director of your health board stating your case
many thanks
Alison
I read the details regarding Ayrshire and Arran allowing funding for Nosila's husband to have PCR testing. That is tremendous news for us too and I will follow up. Brian was diagnosed CML last February and we have had no details or knowledge of how his disease is doing, apart from being told his bloods are OK. I would like to know how often the average patient receives PCR testing.
Looking forward to any responses.
Thank you
Chris Murphy
hi Chris,
please take a look at the webcast called "monitoring and adherence in CML". this should tell you what the clinicians opinions on how often pcr's should be done.
it is my impression that in the UK most chronic stage patients who have reached CCR and are stable are monitored by pcr every 3 months and some clinics underline the pcr with a bmb/a every 12 months.
hope this helps. you should be getting much more information about Brians response to Glivec. it is not enough to be told his bloods are OK. you need information on the cytogenetics and what is going on in his marrow.
you can take a look at what the normal ranges of blood counts are by clicking on FAQ/Glossary button above left.
Sandy ;o)
hi Sandy
Thanks very much, I tend to feel very defeated and isolated fighting Brian's battles - he finds it very difficult and I am desperate to get the right help and support, it doesn't seem to happen much in this part of the world and I truly do feel I am banging my head against a brick wall, you really would think that the support would be there. Brian is going for a bone marrow test on Wednesday and he says he will bring up the subject of PCR testing once again, and if we get no response from onc. I will start writing letters as suggested.
I am really grateful for your reply.
many many thanks
Chris
dear Chris, i understand why you would feel defeated and isolated. CML is quite a rare disease and if you not treated at one of the major centres then there is little chance of meeting others with CML. if you were able to talk to others with CML then i am sure it would help.
however you have found this site and will continue to find support here.
you should be able to ask Brians doctor if he could have shared care with a specialist CML centre. this way Brian will get the specialised pcr and cytogenetics tests he needs to monitor his response to Glivec and the levels of residual disease.
CML is very well controlled with Glivec and once Brian gets access to the right sort of tests and monitoring then you will find that his and your own confidence will return and you will be able to live life as it should be lived..... without undue worry or stress.
it is very hard for carers, sometimes we patients forget that.
i do hope you can get Brians doctor to recognise the need for expert testing and agree to send Brian to a CML centre.
Glasgow (prof. Tessa Holyoake) is excellent.
best wishes to you both,
Sandy ;o)
Hi Chris,
sorry i missed this message...... congratulations on getting access to one of the best haematologists working in CML today. i am so glad you managed to do this and can understand your relief.
keep in touch,
best wishes to you both,
Sandy ;o)
