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Sorry everyone this is my second thread in two days following my 13 week test result - I do have an appointment to discuss my treatment on Monday, but searching for information and reassurance prior to visit.

Nigel offered information that I would need to know whether my result (24.3) was a raw figure or needed to be converted to the International Scale.

I'm hoping Chrissie will read this thread and be able to offer some input - I note from the Destiny discussion that your treatment is now based in Exeter - this is where my treatment started last December I was diagnosed on Saturday 17/12 (following a trip to A and E) and started treatment on Monday 19/12 - I really feel like my consultant saved my life as I had suffered with aches, fatigue and bruising for 8 months plus, but my GP blamed medication that I take for atrial fibrillation.

My very specific question therefore to Chrissie (or anyone else with knowledge of Exeter) do you know the likely conversion rate?

Many thanks for any help.

Hi Daphne

Yes, I have been treated at the RD and E since dx in Sept 2009. The genetics lab does not comply with IS so they have no conversion factor. I did actually take this up with the head of the genetics lab as, up till Oct 2015 my blood was tested at Hammersmith ( I was on 3 different trials) which gives PCR results on IS along side raw results. Since I came off DESTINY in Oct 2015 my blood is now tested at Exeter so I asked about the conversion factor. I found 2 raw readings ( ie neither were on IS)  - one from Hammersmith 0.12% and one from Exeter 0.59% taken  from the same blood produced quite different results which I found confusing to say the least. It was the Exeter reading which caused me to stop the DESTINY trial. This is why I asked about IS or the conversion factor so I had some way of comparing how I was doing. The lab has never managed to come up with an reason for this difference and I have had conversations with the head of the lab in Exeter about it since then. The only thing we can think is that the blood sent up to Hammersmith had maybe taken too long to get there and be tested and had gone off.

Therefore, all you can really do is accept the Exeter readings and compare one result from Exeter with the next. This is what I am doing now . So long as everything is moving in the right direction ie downwards, I wouldn't worry too much - although being newly dx I know this is impossible.

I ought to add that having taken part in a couple of lectures with the current cohort of genetics students - both the BSc and MSc groups-  along with the head of the lab and my consultant, I am happy that the Exeter results are accurate enough. (No I am not a geneticist but they wanted a real live patient so the students could see the practical application of their lab work and hear about the importance to patients to get the PCR results quickly and accurately).

If you have any other queries I am happy to answer as far as I can. Sandy Craine can give you my email address if that would be helpful to you.

best

Chrissie

PS Daphne

If your consultant is Paul Kerr, he is very aware of this site and has seen the PCR primer which he read with great interest.

Chrissie

Hello Chrissie – thank you for replying to my personal plea and offering your personal knowledge about testing and results at the R D and E Hospital. Seems quite confusing and I think as you say I will just have to settle for reviewing each result as I progress through my treatment – hopefully all in the downward direction. Sounds like a very rationale answer, but of course with what appears to be an unsatisfactory 13 week result it seems a long time to wait until the next BCR-ABL test – perhaps I can explain this on Monday when I attend clinic and maybe I could have a shorter interval test – not sure if this would be possible – I’m just (hopefully) seeking confidence in a steady decline in results.

Hopefully I will see Dr Kerr on Monday, as my own consultant who diagnosed my CML and started my treatment so brilliantly seems to be unavailable for a period. I felt as though my consultant was in total control of my treatment and gave me a sense of real confidence and I certainly still need the expert knowledge and support he offered.

Thank you for the offer to contact you again – I’m sure I will be in touch. In fact I will update my post when I have visited the clinic on Monday.

Many thanks

Daphne

Good luck on Monday, Daphne. Hope all goes well. It's always a good idea to wrote down any questions yop have as we all go blank at times when in with our consultants and come out wondering why we had forgotten to ask x,y, or z.

Best

Chrissie

Thanks Chrissie for you best wishes and really good advice. I'm drafting my questions in preparation for 3.30 this afternoon. I have only attended clinics since December, but always feel very confident on the day of my appointment and although my test result of 24.3 was not the best I still feel I will be reassured that (maybe with slight changes) everything is progressing OK. I will let you know how I get on later.

All the best Daphne

As promised, but rather late, an update on the feedback from my Monday appointment. My own consultant was back which was brilliant as although I've only known him since December I already trust his judgement.

My blood test were improved with my WBC now 4.3 Neuts 2.0, Hb 120 and plts 158 (improved from 3 weeks earlier when WBC was 3.1, Neuts 1.70 Hb119 and Plts 174). As discussed earlier in my thread the appointment was to review the result of my PCR test taken 3 weeks earlier. My Consultant confirmed the result was 24.3 which he commented wasn't brilliant, but reassured me that I shouldn't worry about statistics - my treatment is very individual and for the moment he is confident that I should continue on the same treatment of 400mg of Imatinib. My next appointment is July 10th when my second (6 month) PCR test will be taken. Hopefully there will be a good improvement as expected by my Consultant - if not I'm sure I will be seeking urgent advice from the forum. My instructions are to enjoy the summer which I really intend to do. I would welcome any comments.

Many thanks to everyone for such wonderful support and information.

Daphne

Good news, Daphne. It does help to have confidence in your haem and I have found them to be excellent. Take his advice and have a good summer. It's the downward trend which is the most important and as we have seen over the years, some people respond quickly while others get there more slowly. We are all individuals and most do get there in the end. I remember watching a  video of Prof Jane Apperley  (from last year's conference at Hammersmith Hospital - may be available on You Tube if not on this site) in which she addressed concerns from CML patients whose hospital is not on IS to measure PCRs. She said that it is the downward trend that is the most important and that is what I took on board when worrying about discrepancies with Hammersmith.

Take care

Best Chrissie

Three months on and I'm picking up an old thread to avoid retelling my whole story...

...Moving on I have now been taking Imatinib since December and actually feeling very well - I really didn't realise how ill I felt before I was diagnosed in A and E. My treatment at the Royal Devon and Exeter has been superb and I have total confidence in my consultant. However my BCR results are not as good as hoped - 24.3 at 13 weeks and 15 at 29 weeks. My consultant is keen for me to change my treatment and I totally agree with this plan. My consultant has today discussed the options of further treatment with Dasatinib or Nilotinib - I'm a bit overwhelmed with the choice and information available and wondered if anyone could help by providing any clear 'pointers' from personal experience or knowledge. I also have AF and take medication to control my heart rhythm and warfarin as a precaution against blood clots. I need to make my decision by Wednesday and will start by new treatment on Friday. If anyone feels they can offer some level headed advice it would be really welcome.

Many thanks

Daphne

Hi Daphne

Sorry to be late in answering but I only just went onto this site. By now I guess you've had the clinic appt and made a decision regarding Dasatinib or Nilotinib. Both seem to have very good results, but, as with all drugs, both carry their own side effects. No doubt your haem discussed these with you - especially with your medical history and other issues. 

Best of luck on the new meds,

Chrissie

HI Daphne,

If you already have cardiac issues then maybe nilotinib would be contraindicated? Please ask your clinician.

Sandy

Thread continued from: 
13 week test result