You are here

BCRABL/ABL results

Hi everyone.
I'd be most grateful for any thoughts on my series of BCRABL/ABL results

Brief history
Diagnosed with CML in April '07 . Started on Gleevec 400mg in April '07.
Results of BCRABL/ABL % since then
March '07 56.97( blood test done to help confirm diagnosis)
July '07 7.895
October '07 0.139 ( really pleased with this result)
January '08 0.208 ( hoped this was just an upward blip)
April '08 0.431 (Very disappointed at this result)

Although I'm seen by specialist in Tunbridge Wells, my blood tests as above go to Kings College Hospital in London for the BCR/ABL test

When I see my specialist tomorrow, I'm minded to ask for a Imatinib plasma level test as per Sandy's helpful posting. I've been very lucky with side effects with Gleevec and wonder if my system has gradually got used to the drug and is beginning not to work as effectively? Based on the 6 month result I'd hoped to be well under 0.1% by now, whereas I'm facing a 3 fold increase from the 6 month position.

Any other thoughts would be most welcome

Andy

Y A H O O O !!! Y I P P E E E !!!

Number 1180 in the Zero Club

Zavie

Hi Andy,

Based on your PCR test results you are in CCR. This is a 2 log reduction or a 100 fold reduction from diagnosis time and it gets you a Zero Club number.

The PCR test itself can have an error of .5 log.

Your response is well ahead of the Canadian standard for treatment response to CML.

3 months - CHR
12 months - MCR (1 log)
18 months - CCR (2 log)
24 months - MMR (3 log)

Zavie

Zavie Miller (age 69)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.6 log reduction Apr/08
zmiller@sympatico.ca

Hi Andy,
I understand you must be disappointed given that you had such a good initial response. However I must agree with Zavie that your pcr's... although rising... are not rising by very much and are doing so quite slowly. This may indicate that you need an increase in dose and I think that asking for a plasma test would be a very good idea and may clear the picture which would then allow you to make informed decisions about your therapy options.
Remember if your clinics lab is unable to do it then sending the sample to Bordeaux is easy and it is free. Maybe it would be a good idea to print off all the info and instructions contained on the 'EUTOS' pack under Newswire and take it with you to your consultation.

keep us updated,
best wishes,
Sandy

Hello Andy

Yes I can see exactly what you mean - I have a similar set of figures over a slightly longer timescale being diagnosed in September 2006, and similar feelings about them. My numbers come in log reductions. I had a 1.9 log reduction at 8 months, 2.4 at 1 year, 2.3 at 15 months and 2.2 at 18 months [March 2008]. At that last visit, my consultant emphasised that I was stable but nonetheless decided to put my dosage up to 600mg to see if we could push the numbers down lower. That suits me fine!

Like you I had very few side effects on 400mg and feel fine on 600mg. I have copied out Sandy's info on blood level testing [thank you Sandy! :-)] and will be giving it to my consultant when I next see him. It does seem a good idea to look at this.

Up until very recently, the 3 log reduction has been the magic goal to aim for, but Dr Druker has recently gone on record to say that CCR within 12 months is the new aim. This is based on further analysis of the 6 year figures. Apparently if you can keep in CCR for 2 years, and even better for 5 years, then the survival statistics are as good as if you had MMR. Sounds very encouraging to me!

I've come across your post a bit late, I think by now you will have seen your consultant. Hope it all went well....

Regards, Janet

Thanks to Zavie, Sandy and Janet for helpful comments.
I'm heartened by Zavie's comments re Canadian position and thanks for the membership of the zero club Zavie.

Sandy, I saw specialist yesterday and interestingly he wasn't aware of the plasma monitoring offer by Novartis, so I've given him all paperwork and he is going to arrange for testing. He had already made up his mind about putting me up to 600mg in the light of my plateauing on readings for last 6 months and as I've been lucky with side effects so far I'm happy to up drug strength if this pushes me down below the 0.1% level. The idea is to do the plasma test before upping the dose to 600mg as this should give some info re why the plateauing has occurred in terms of the 400mg level.

Janet, Thanks for sharing the info above. The info re Dr. Druker's comments re CCR are reassuring. Have you the web link as to the full quote on this / article?
Very best of luck when you get your next result based on the 600mg level.
Andy

Hello Andy,
It is really good that you were able to tell your doctor about the European treatment outcome study - EUTOS-
In my opinion this is a crucial new step to determining why some people are not having the expected optimal clinical response.
As time goes on and expert CML clinicians/researchers build on their understanding of how TKI's like Glivec work and how individuals differ in the uptake of the drug, we as patients really do have a chance at being 'partners' with our doctors in the management of our disease. I believe this is an important advance in how we view healthcare and we -and our doctors- can benefit both from the clinical and psychological viewpoint.
I feel we all now have the chance to spread the word and help educate our sometimes overstretched clinicians who do not all have the time to keep up to date on the latest advances on monitoring.
By 'advertising' the EUTOS initiative to as many doctors as we can, be they experts in CML or general haematologists, we are not only helping ourselves but also the wider global CML community.
Well done for taking the paperwork with you. I hope that the plasma trough test sheds some light on why your pcr's are 'stuck'.

Best wishes,
Sandy

Thanks for the good wishes Andy, I hope that 600mg works for you also. It seems a very good idea to do the plasma test first and I hope that goes well and gives you some answers. I am hoping that my consultant will agree to do the test as well when I see him in a fortnight's time.

The link to the discussion with Dr Druker's comments is
http://www.leukemia-lymphoma.org/graphics/National/EI2546BT6CMLTranscrip...

It's a very interesting read and has some most encouraging stuff in it.

Regards, Janet

Janet, Thanks for info on this article. What an informative read it is, and what a positive chap is Dr Druker. Andy

Hi there

I was interested to hear from others who might benefit from the EUTOS testing. Just wondered if anyone knew of any other contacts/locations for the testing in the UK, as I have had no joy when speaking to my consultant at Nottingham City Hospital. He claimed that it is only useful where patients are suspected of not taking the correct dose on a regular basis. I have also sent an email directly to imatinib@chu-bordeaux.fr, as suggested last time, but have had no response.

It would be really useful to hear how other people get on, once they have spoken to their consultants about the test. Can it be accessed via a GP, if your consultant isn't playing ball? Did you say the test was free of charge?

Good Luck!
Chris

Hi Andy

I came across this discussion as well by Dr Druker, Dr Talpaz and Dr Sawyer, in it Dr Talpaz states that if you can maintain CCR for 4 years, then the future looks as bright as if you had MMR. You will have to register to gain access but it is well worth it!

http://clinicaloptions.com/Oncology/Conference%20Coverage/Hematology%202...

Regards, Janet

Hi Janet,
Many thanks for the additional web link. Again it seems a very useful update on current thinking on CML and a good comparison of the various medications available in the States.( and hopefully in the UK in due course!)
I had the plasma level test yesterday - it's been sent to Bordeaux for testing!! - and await result.
I've now started on 600mg of Imatinib (day 2), early days, but feel ok so far.
I'd obviously be interested to know how you fair on the new dose when you get your next test result . If you did want to contact me direct, rather than through site my e mail is parkin_a@sky.com
Thanks again

Andy

Sandy, I just wanted to say thanks again for the info posted on this website re this issue.
I got my plasma test result back via my consultant, earlier this week, and it was low at 511 nano grams per ML rather than the 1000 plus recommended. This could well explain my stalled PCR results and I'm hoping that the higher dose of 600mgs that I am now on, will do the trick. I'm due a PCR test next week and then it will be fingers crossed!
It is really good to have this website, providing all this info

Many thanks Andy

Hi Andy and Janet - seems i'm in about the same situation as you after 18 months - see my new posting. All the best to you both on the higher dosage! I don't know if we can get the plasma testing here in NZ - what does it tell you? Is it common in Europe?

Cheers

Kenny