Hi Alastair,hope you are doing well.I see you are from the North West me too .I was diagnosed in December 2017 and I am on 400 mg Imatinib. I currently go to Arrowe Park Hospital on the Wirral and see quite a young Haematologist ,she is very nice ,good listener ,but she doesn’t give me enough information on how I am doing.Everyone on here seems to know every aspect of their blood tests ,what’s normal ,what’s high or low , I did ask her in the beginning ,what is a PCR test and she didn’t know she had never heard of it .I wait weeks for my BCR- ABL test ,she sometimes sends me a letter with the result but this time she hasn’t bothered .I recently went to my GP on another matter and he didn’t have my latest bloods on his computer and they were six weeks ago.My last result was from May which was 0.79%,it is now October and I haven’t a clue what it is now and I don’t go back till November .So my question is ,Do I change Doctor ,can I just ask to move somewhere else , and if so where would you recommend I go to .I feel I am doing ok ,TOUCH WOOD ,I feel fine apart from the usual fatigue but I no longer work so I can rest when I want .Hope you don’t mind me asking ,thank you , Denise.
You are here
Alastair,can you recommend please.
Hi Denise sorry I haven't been around for a few days. In terms of the PCR question, PCR is the analytical method by which the BCR-ABL results are determined. There is booklet which explains how it works on this link
On the question of options on consultants in the region I think that might be better if we were in direct contact if that's OK, rather than in a public forum. If you can send an email to CMLSupport@gmail.com, and ask them to forward it on to me, I hope I'll be able to help by direct e-mail.
Best wishes
Alastair
Alastair and Denise,
I will put you in touch by email.
Denise, it is not acceptable that your heamatologist does not know what a PCR test is! You can request a referral to another centre that is more experienced in treating this rare disease. If you are based in the Wirral then probably the nearest expert centre would be Liverpool Royal University Hospital.
Sandy