pcr tests

Would it be possible to change your husband's main care from Ayrshire to say Glasgow under Tessa Holyoake's team ? He could have the routine blood tests done in Ayrshire but go to Glasgow for say 3 monthly checks or as is deemed necessary by Prof. Holyoake. May be your husband's consultant could advise on this or if not I would suggest contacting Prof. Holyoake directly to ask for guidance.
Please keep us posted on how things progress.
Best wishes
Elizabeth

Just thought I'd add that I have been with my consultant in Edinburgh since diagnosis 4 years ago. For much of this time I was a regular visitor at the clinic (because of low blood counts) and had monthly PCRs - I am now going every 10 weeks or so and have a PCR test every time - a cost issue has never been raised. The lack of PCR testing in Ayrshire is definitely worth pursuing as it seems anomalous with practice elsewhere and is very important in monitoring CML - I agree with Elizabeth - it must be worth considering having Glasgow as your main consultant if this succeeds in getting round the problem. Best of luck - hope it all works out.
Annie

Christine and Brian
Hope all goes well tomorrow - appreciate it is difficult to absorb all figures etc when relatively recently diagnosed but the blood counts, marrow results and PCRs are all vital. Why not ask your consultant for a print-out of blood counts since diagnosis - you want to look at total white count, neutrophils, haemoglobin and platelets. Also what was the % of Philadelphia chromosome positive cells in the bone marrow tests that have been done - have any PCRs been taken - what is the plan for doing PCRs going forward, or otherwise how is consultant planning to monitor what is happening with Sprycel. Ask also how many CML cases your consultant sees, does he laise with Glasgow etc etc. Please do not feel you are being pushy - this is all very standard information which should be readily available.
If you want any halp interpreting the info, if you post it on the site here many people will be able to help.
All the best - nice meeting you in Edinburgh
Annie

Christine

Our story might help you if the funding for PCRs does not come through in January.

Val was diagnosed at Stoke Mandeville Hospital in Buckinghamshire. At the time, they had only a handful of CML patients and whilst we have huge regard for the Consultants there, we felt we would like a second opinion from a centre that deals with a larger number of CML patients. We just asked - straight out for a second opinion, but very politely, wondering, as you say, about not causing a fuss or doing the wrong thing. It was no problem. Very quickly, we had an appointment at the Hammersmith in London with the wonderful Professor Jane Apperley. That produced a system for us that works really well. The treatment is set by the Hammersmith (where we go every six months) but in between Hammersmith visits we go to Stoke Mandeville for the routine blood tests. Both sets of Consultants are happy with the arrangement and there are no communication problems between the Hospitals.

So could you do the same thing with Glasgow? I think being frank with Brian's Consultant about your concerns as to PCRs and asking for a referral to Professor Holyoake's team about PCRs(but making it clear you do not want a transfer to Glasgow and that you have confidence in your local Consultant)should not be a problem. I have learnt over the last three years that it can be very helpful just to be open and frank with the people you deal with in the NHS as a means to help the system to give you what you need.

I hope that helps your decision making.

Good luck and chin up!

David

Hi Christine & Brian,
We live in darvel and attend Ayr hospital,Dr Eynaud is great, we dont want to transfer to glasgow if we don't have to,after speaking to others and dr holyoake we were advised to write to the executive financial director for the health board
,this we have done and are awaiting a response from him there is the possibility of going to glasgow but we feel it is in our intrests to have it done at the hospital you are being treated in billy hasn't had his pcr done for over 2years the healthboard won't fund these tests.We don't know how billy is doing he 's exhausted all the time and wonders what is happening inside,we want to know but are scared incase all is not well.
take care
alison